Breast and cervical cancer screening rates remain low among immigrant women and those of low socioeconomic status. The Cancer Awareness: Ready for Education and Screening (CARES) project ran a peer-led multi-lingual educational program between 2012 and 2014 to reach under and never-screened women in Central Toronto, where breast and cervical cancer screening rates remain low.The objective of this qualitative study was to better understand how Chinese and South Asian immigrants – the largest and most under-screened immigrant groups according to national and provincial statistics - conceive of breast and cervical cancer screening. We explored their experiences with screening to date. We explicitly inquired about their perceptions of the health care system, their screening experiences with family physicians and strategies that would support screening in their communities.We conducted 22 individual interviews and two focus groups in Bengali and Mandarin with participants who had attended CARES educational sessions. Transcripts were coded through an iterative constant comparative and interpretative approach.Themes fell into five major, overlapping domains: risk perception and concepts of preventative health and screening; health system engagement and the embedded experience with screening; fear of cancer and procedural pain; self-efficacy, obligation, and willingness to be screened; newcomer barriers and competing priorities. These domains all overlap, and contribute to screening behaviours. Immigrant women experienced a number of barriers to screening related to ‘navigating newness’, including transportation, language barriers, arrangements for time off work and childcare. Fear of screening and fear of cancer took many forms; painful or traumatic encounters with screening were described. Female gender of the provider was paramount for both groups. Newly screened South Asian women were reassured by their first encounter with screening. Some Chinese women preferred the anonymous screening options available in China. Women generally endorsed a willingness to be screened, and even offered to organize women in their community hubs to access screening.The experience of South Asian and Chinese immigrant women suggests that under and never-screened newcomers may be effectively integrated into screening programs through existing primary care networks, cultural-group specific outreach, and expanding access to convenient community -based screening. Despite well-established, organized cancer screening programs  1], new, new1], Barriers to screening among immigrant groups are multifold –19. WomeThis evidence formed the basis for the Cancer Awareness: Ready for Education and Screening (CARES) project, a collaboration of over sixty community-based organizations and two academic hospitals in Toronto. The project aimed to reach facilitate access to breast and cervical cancer screening through various networks for new immigrants, refugees, and the under housed in Toronto. At the core of the project were 42 Peer Leaders, who were recruited through partner agencies to provide health education workshops in their native languages.Women of South Asian and Chinese descent made up a large proportion of CARES program participants, and are the most important immigrant groups in Canada . They arongoing knowledge gaps and barriers related to breast and cervical cancer screeningthe role of family physicians and primary care providers in screening; andsolutions and preferences to facilitate future access to screening for women in their communitiesIn this qualitative study, we obtained a purposeful sample of Mandarin and Bengali speakers to better understand of how two groups conceive of breast and cervical cancer screening. Our research questions aimed to illuminate participants’ perspectives on:This work forms part of a wider initiative in Ontario to identify the key components of an effective regional program for breast and cervical cancer screening .Between January and April 2014, we held focus group and individual interviews with a purposeful sample of Mandarin and Bengali speakers to explore their fears, expectations, and experiences to date, as well as their perspective on why women in their communities may not access screening. We explicitly asked about their experiences with Pap tests and mammography in Canada, and about their experience with family physicians, which are the major providers of screening in Ontario. Their perspectives and preferences were also gathered to identify possible solutions to facilitate access to screening among their peers and in their community. Preliminary semi-structured interview guides were developed and refined by the study investigators to reflect these research questions, and further revised based on Peer Leaders’ feedback. They were then translated into Mandarin and Bengali and back translated into English. This study used a grounded theory approach based on Glaser and Strauss ; the anaFrom May 2012 to October 2014, CARES held 148 educational sessions conducted in 20 languages for 2023 women and facilitated 161 Pap tests and 88 mammograms for attendees. We recruited interview subjects from the pool of 739 CARES participants who agreed to receive a follow-up phone call. Mandarin and Bengali speakers who were 4–12 months post-education were telephoned and invited to participate.Two bilingual Peer Leaders were selected for their interviewing skills to conduct telephone interviews and trained by two co-authors  in non-judgmental, open-ended interview techniques. JH conducted interviews in English as a second language with other CARES participants using the same methods and semi-structured questionnaire. We included two English interviews with women from Bangladesh in this data set. At least three attempts at telephone contact were made before removal from the participant pool. Phone interviewees were offered token gift certificates for their time. Verbal informed consent was obtained from each participant over the phone . IndividAll interviews were transcribed and pseudonyms were used during transcription to ensure anonymity. One-on-one Bengali and Mandarin interviews transcribed and translated by the same bilingual Peer Leaders that conducted the interview. English language interviews were professionally transcribed.To add to the analysis, focus groups were also conducted with CARES participants. CARES Peer Leaders openly invited Mandarin and Bengali speaking CARES participants to participate in focus groups at partnering community centers. A focus group interview guide was developed  to provide further insight on the lived experiences of these women. Participants were offered two-way tickets for public transport and light refreshments. Two bilingual, professional facilitators with no involvement with the CARES project were recruited and trained to moderate the Mandarin and Bengali-language focus groups. Written information consent was obtained from all focus group participants. Focus groups ranged from 45–75 min, which were audio recorded and field notes were taken. Focus groups were transcribed and translated by the bilingual focus group facilitators due to budget limitations.All procedures were approved by the Women’s College Hospital Research Ethics Board and St. Michael’s Hospital Research Ethics Board.Multiple strategies were used to ensure rigor and trustworthiness of findings. After the initial reading of interview and focus group transcripts, notes were made in the margins. Deductive strategies were used to identify parent codes followed by child codes. The coding structure was initially identified through multiple readings of interview notes and transcripts by four separate reviewers and discussed to establish congruency . Two reviewers  subsequently organized and coded the transcripts through an iterative constant comparative and interpretative approach. Attention was paid to outlier codes as well as those that were congruent. Through an inductive process themes were identified and tested . A thirdWe held two focus group discussions, one in Mandarin and the other in Bengali, and individual interviews with 23 women that yielded rich data and saturation of predominant themes. Available demographic information is outlined in Table risk perception and concepts of preventative health and screeninghealth system engagement and the embedded experience with screeningfear of cancer and procedural painself-efficacy, obligation and willingness to be screenednewcomer barriers and competing prioritiesFive major themes emerged from the focus group discussions and interviews. The common themes encountered were grouped under five non-hierarchical domains:Other themes emerged that appeared specific to Chinese and South Asian groups are interwoven and highlighted through these groupings. These domains overlap and interact on multiple levels, and contribute to participants’ overall attitudes, beliefs, motivation and willingness to be screened.Screening was a challenging concept. A number of women specifically cited the absence of symptoms as a reason not to get screened. “My health is pretty good, there is nothing to be concerned about”. Cyclical breast pain and ‘lumpy breasts” were also described as worrisome and a reason to seek screening, and participants were unclear as to the role of mammography in addressing these symptoms.“I feel that Pap test cannot find anything. Every time when I went to have Pap test, they told me everything was fine. Afterwards, when I had the ultrasound - you know because I bleed too much - they told me they found three…. polyps.55-year-old Mandarin speaker, in Canada for greater than 5 years, Pap and Mammogram up to dateparticipant #3“Different reason, sometimes we may think our health is pretty good. We do not feel any big change for our health condition, and at the same time, we are too busy” – participant #4“For young people like us, we may feel we are fine, not any serious problem with our health, even if there is minor problem, we can recover by ourselves, so , ok,, that is it, that is it, do not worry. Later I can go to the doctor and see what is the problem, I will wait till I have to have the test.” – Mandarin focus groupSeveral informants described their anxiety or confusion about their medical investigations for abnormal uterine bleeding or pelvic pain, and remained uncertain about the purpose of Pap tests, citing their purpose to identify medical conditions such as uterine polyps and fibroids. There were also a few instances in which Pap tests were postponed until the presentation of symptoms.The strengths and limitations of screening were generally not well understood, and this translated to potentially false reassurance of perfect health, or being cancer-free. Absolute terms were sometimes used to describe the benefits of screening: “My doubt was eliminated after my mammogram.” “I do not have disease, I have just finished my check up.” “I want to save my life!”Risk perception was shaped by an individual’s personal experience with health, ill health and screening to date, as well as contact with family members and acquaintances that had been diagnosed with cancer of any kind.“…In Bangladesh I did not see or hear our guardians or elders talk about Pap test. I know so far this is for ovarian cancer or cervical cancer! …My family does not have this history so why I should do it unless I have any problem… … because I am not feeling any problem I am not interested to do the Pap test.”46-year-old Bengali speaker, in Canada for greater than 5 years, never had Papno-cost access and relative ease of accessing health practitioners in urban Canada.“Yes, after [the CARES session] I went to… my family physician, and did all the related tests that you mentioned at the presentation. We all want to be safe and because treatment here is free, and I came to know from your program that there is no pain and no problem in doing it, so I became interested.”30-year-old Bengali speaker, in Canada more than 5 years, Pap up to date“If…the doctor wants me to do that, I will do it, it is covered by [provincial insurance], right? After I deliver my baby, when I go to my doctor for regular visit, I will check with him when he will arrange the PAP test for me. .(Probe)…. Well, back in China, no, because in China the government will not pay for us, it seems no one will go to do this test unless if they do not feel well, they will not go for regular screening. Wait, yes, unless we do it though our annual check up which is organized by our company.”33 year old Mandarin speaker, in Canada less than 5 years, unclear if Pap up to date but recently obtained in ChinaEasy access to screening was generally credited to role of primary care providers in screening. Language barriers, and feeling rushed or not heard by their providers were vividly described by a few respondents.“My family doctor, well, I’m not willing to talk to him. He is not professional, very bad. Every time when I go to see him, he just finishes in several minutes. He is not at all patient. Also, he is a male doctor; I do not want to have a check up with him at all. My previous mammogram was done in Etobicoke, the doctor seemed…. not very professional, his attitude was not nice, in one word, I was afraid.”52-year-old Mandarin speaker, unknown time in Canada, Pap up to date, requesting help from CARES to obtain mammogram“….Here doctors don’t give time, when I go then I have to wait for 2 h but they spend only 10 min with me. They don’t take care about what patient needs to know about pap.”58-year-old Bengali speaker, in Canada 5 or more years, screening up to dateWe specifically asked about the be informed of the result of the mammogram or Pap test, even if it is normal. Notably, this practice has since changed in Ontario, and patients receive a letter in the mail with their result.“People always say, no news is good news, but there is always a concern in my heart, why not tell me the result”64-year-old Mandarin-speaker, in Canada more than 5 years, Mammogram up to date, not eligible for Pap“My opinion is that the family doctor should inform her patients about their any test result… whether it is positive or negative, it is my right to have a copy.”61-year-old Bengali speaker, in Canada for less than 5 years, screening up to dateWomen strongly voiced their preference to Family physicians were otherwise viewed very positively. Bengali-speakers especially valued the convenience, continuity and support offered by their providers, and felt that their reminders were effective in prompting them to obtain both cervical and breast cancer screening.“It’s good. Here in this Canada I see that family doctors are … they are someone to coordinate all of my health problems. So it’s good, family doctor… they try to handle this.”33-year-old Bengali speaker, unknown time in Canada, Pap up to date through CARES“I feel comfortable with my family doctor. Yes I can talk with the doctor freely and don’t face any problem58-year-old Bengali speaker, in Canada greater than 5 years, screening up to date“.. is more convenient, because…they can have the general check up together with the Pap test there, they will like to do it together…. you do not need to make another arrangement, and you do not need to have a separate travel. You know, you have to ask for a leave from work for that, right?35-year-old Mandarin speaker, in Canada unknown amount of time, Pap up to daterecommending and facilitating screening was reiterated with examples of opportunistic screening initiated by their family physician. Once women were engaged, they were often retained in screening if they had a positive experience.“Because I had an itchy vagina, then the doctor asked me whether I have ever done a Pap test, I told him no… the doctor asked me, “can I do your pap test?” Then my family doctor told me to go for Pap test with this female doctor. Since then I go by myself to do my pap test.”37-year-old Bengali speaker, in Canada more than 5 years, Pap up to dateThere were some differences in the role of the family physician in promoting cervical cancer and breast cancer screening. Generally, respondents followed their physician’s advice to obtain mammography. Obtaining Pap smears depended more on the gender of the provider, ease of access, and the other factors described in this study. The importance of a physician Female gender of the health care practitioners was paramount in facilitating access to cervical cancer screening for almost every informant. Some expressed frustration with the lack of choice in Canada in accessing female practitioners – “the female doctor is really very…very few… right?”. Others reported that they had been screened after their doctors referred them to a female practitioner for their Pap test.“…we Bengali want to go to a female doctor to do a Pap test, but some doctors are male doctor and women do not want to do their Pap with them… For [women] who have a male family doctor, if a nurse or doctor from [other institutions] can come and do this test, it would be better.”30-year-old Bengali speaker, in Canada more than 5 years, Pap up to date“Because my family doctor is a male doctor, I could not find a female doctor, I know… this person who refused to be checked by male doctor. So she had never had one test. I told her if she had attended your session, your project could have find female doctor for her.”56-year-old Mandarin speaker, in Canada greater than 5 years, screening up to datemodesty. Chinese respondents described embarrassment or shame with the prospect of having a Pap, which is worsened still if done by a male provider. In contrast to Bengali informants, who often voiced their preference for a relationship with their primary care provider, Chinese informants often coupled preference for a female provider with asking Peer Leaders for a referral to an anonymous, third party option for care.“…today I felt so embarrassed, I did not feel comfortable, because I was checked by a male doctor today. Yes, if there is workshop in the community, this will… encourage me to have the check, why, well, you know, because all this check up is embarrassing, right? (Hesitates) … because we are all married, it should be ok for them to have this check, but in another way, it is also embarrassing for you to tell others that you are having this kind of check up. You can not tell them, ‘oh, I have gone for a check up today, it was done by a male doctor’.”44-year-old Mandarin speaker, in Canada unknown time, Pap up to date, had mammogramBangladeshi informants described their preference for female providers in terms of health systems in their home countries strongly influenced their attitude towards screening in Canada, as well as their level of confidence in their new health care system. Participants from Bangladesh emphasized that screening was often a new concept for them that they encountered for the first time in Canada, unless they were aware of the test but were unwilling to pay out of pocket in Bangladesh. Informants from Bangladesh specifically contrasted their experience with that of their health system in their country of origin, often highlighting the relative ease of access to care now, and were often engaged in screening for the first time through their primary provider.Participants’ experience with the “I hope you can help to arrange that for me, I trust more for the hospital for checking up…. over some other small place, I do not know why, I just do not have confidence for them.”64-year-old Mandarin speaker, in Canada greater than 5 years, not eligible for Pap, mammogram up to dateIn contrast, Chinese women of all ages had been exposed to screening in China. “I often have this checked up back in China, not only here, preventive check up.” Chinese informants were often predominantly frustrated with the gatekeeper system restricting access to specialists, and slow access to diagnostics – “Back in china, if today your disease is diagnosed, tomorrow the hospital can arrange a surgery for you.” This did not necessarily deter them from screening, but they expressed a preference for hospital-based specialist delivered care, or cited positive experiences with company-sponsored employee annual health checks in China, and a preference for group screening activities.“Very concerned…. because, because some symptom might a little bit similar to the cancer, so I feel I am afraid. Sometimes, this kind of concern may be not necessary, but… I do not feel like going for a check, I do not like check. I am kind of the person that do not like to go for check even if I am sick, the feeling to be final judged by the doctor, I do not like that, so I do not like go to see the doctor.”52 year old Mandarin-speaker, unknown time in Canada, Pap up to date, requested help from CARES for mammogram“Before I attended the info session, I seldom paid attention to the check up or whatever, neither did I pay attention to the talks in the TV, radio. Now I try to pay more attention to that, but the more I learn, the more I am scared…It is better for me not to know so much…I would be less nervous if I did not know so much. I am so stressed.”56-year-old Mandarin speaker, in Canada greater than 5 years, screening up to dateFear of cancer and fear of a positive test result were common among both South Asians and Chinese informants. Some had become anxious about their risk through external influences like the media’s intensive coverage of breast cancer, or through the unintended consequence of the CARES program itself. A few participants avoided screening altogether to avoid finding out the unknown.“I just had it checked two years ago; because I feel it is too painful, I do not want to check it anymore. Right, when the machine compressed, it was very painful. … I feel they should be gentle… I mean I did it in [urban location], the female doctor dragged my breast here, there, very hard, I feel it is unbearable, so I do not want to check it anymore.”60-year-old Mandarin-speaker, in Canada more than 5 years, not eligible for Pap, Mammogram 2 years ago but unwilling to do againFear was a central theme, and was related to various aspects of cancer screening. Fear of the procedure itself was common, and often linked to pain in the context of mammography. Fear and dread was heightened if there was no explanation of the procedure before it was done. Several informants described specific physical and emotional trauma incurred by an aggressive practitioner, and a rushed or painful Pap test by an unskillful practitioner, and this negatively influenced willingness to be screened again. While this finding was more commonly described for mammograms, it highlights the effect of certain unhelpful approaches in negative experiences and in undermining willingness to be screened for both procedures.sanitation of medical instruments. “I am afraid that [the speculum] is not properly sanitized. It is no good. A healthy person might catch disease through this.” “Before they start the Pap test, they can explain to the patient if the instrument is disposable or if it is not, have it been well sanitized”.A number of sources of anxiety were specific to Chinese informants. One of the most striking examples was the concern about the invasive diagnostic procedures as a result of breast lumps or breast complaints. This diagnostic experience became an ongoing source of unease about their overall health. Rarely did these experiences take place in the context of routine screening, but rather in response to common breast complaints that had led to invasive testing both in China and in Canada.“….after your session, I have went to re-check my breasts, after my previous surgery, I am kind of rejecting the doctors in Canada, en, because, first, he cut open my breast, and told me there is something inside, then the biopsy, and could not tell what was that, He told me it might be cancer, it might be not, you made your own decision whether you want to remove it.”44-year-old Mandarin speaker, in Canada unknown time, Pap up to date, had mammogramA number of Chinese informants described ‘painful’ and ‘scary’ normalization’.“[The first time] I was feeling scared about what would happen, then that neighbour doctor said, you will have nothing, everything would be normal…. Then I did it. At first I got a little fear but after that it’s become normal. Now, when I am asked for an appointment, I try to make that very day when they ask. Sister… honestly when I went for the first time….I went with so many layers of my clothes due to winter and I have to put them down from top and I felt uneasy to put down clothes…laughing…at first….you know we are Bengali…then I felt uneasy though female was there…after then I got used to it and I used to dress for the test friendly. The first time I did not have a vehicle, so it was not easy, but it became easy now when my kids drop me. Also my husband does… There is no problem that I feel when I need to do something important.”52-year-old Bengali speaker, in Canada more than 5 years, screening up to date“Interviewer: Easy, okay. And what makes it easier? What do you like about the system?Respondent: And I didn’t feel anything. I heard that it will be painful… but it was not painful, it was okay. I am happy with that.”33-year-old Bangladeshi, unknown time in Canada, Pap up to date.Many participants from Bangladesh were never screened for either breast or cervical cancer until arrival to Canada. They described their dread leading up to screening, which dissipated after participating in a positive screening experience, or a process of ‘“When I did my pap then there was a female doctor, not from our community …then she told me before the test. Here doctors usually say about the procedure before the test so it helps in reducing fears. Because she told me before so I did not have fear.”37-year-old Bengali-speaker, in Canada more than 5 years, Pap up to dateThese positive experiences helped them to overcome their fear and supported their willingness to participate in future screening. A gentle operator and clear explanation of the procedure beforehand was also described in reducing anxiety before and after the procedure.Most respondents were willing to be screened, irrespective of their age or screening status, and described screening as a socially desirable act viewed positively, with internal and external rewards. The exceptions were those that had a traumatic screening experience, internalized fear leading to complete avoidance, or whose risk perception was exceptionally low.self-efficacy - “doing something for my health” – “I will consider my own health condition”. While these reflect some of the CARES program messages around gender and self-care, the strength and pervasiveness of these statements suggest internalized concepts of self-determination. We specifically inquired about the influence of family members, such as husbands, in determining whether women can go or are supported to go for screening. A few Bengali informants knew of other women whose husbands would deter them from seeking screening, but the participants themselves described their families as supportive, helpful with transportation or translation if needed, and supportive of the decision to obtain screening as their own. “I make the decision by myself for everything”. Bengali-speaking participants actively offered to organize other women in their apartment building and their community to obtain further education sessions, or organize group-screening events. This enthusiasm was also reflected in the terms used in relation to screening among younger participants, that screening provided “reassurance”, that they ”want to be healthy”, and screening will “save my life”:“You need to love yourself, then you can love others, if you do not love your self, can you expect others love you.”35-year-old Mandarin-speaker, unknown time in Canada, Pap up to dateThis willingness to be screened was expressed in terms of obligation and duty to their family stay healthy. “For the sake of your happy life, your family’s happy life… for the sake of good health” (Mandarin focus group). Younger Chinese and Bangladeshi informants also endorsed screening as part of their duty as mothers.“Right, this is also good for Canada, if all these group women were left alone, they are all mothers, you know, the emotion of mom can affect their kids, the wellbeing of the next generation in Canada can be affected, right?”44 year old Mandarin speaker, unknown time in Canada, Pap up to dateParticipant #3“Now that I have a baby, no one’s going to look after her if her mom dies, it’s finished….” – Moderator“Oh please don’t mention it!” - Participant #3“So, I have to live for my daughter. I have to work for her” - Bengali focus groupMotivation was also described in terms of “When it was done? Very nervous, pretty afraid. Also very uncomfortable, I do not like this kind of check up, but the doctor wanted me to do it, so I did it considering of my age. Good thing is that the result is normal. … (Sighs), for health, if it is needed, I have to do it.”52-year-old Mandarin speaker, unknown time in Canada, Pap up to date, Mammogram out of date, requested help from CARES“For me, if I were alone, I am lazy, I do not feel like going for the check up… My children, my family members, on the other hand, feel that I need to have this check up…. they believe that if I will not go for the check up, that might lead to even bigger problem.”55-year-old Mandarin speaker, in Canada for more than 5 years, Pap and mammogram up to dateOlder Chinese women voiced an often-grudging obligation to follow their family or doctor’s recommendation.Language barriers were a central theme in ‘navigating newness’, and often necessitated accompaniment to visits by younger, bilingual family members who could translate. “I cannot speak English, if I go myself… I have to have my daughter with me, right?”“The doctor gave us a date, even my husband did not know about the place where to go. We went over there and waited for one hour or one and half, after they saw us. Travelling there is also a problem. We are new here and we don’t know anything and where we should leave our kids to take care…. The doctor- his language and my language, could not communicate …I could not describe my problem accurately…. Now I am communicating with you in Bengali and I am sharing everything that I have in my mind - but when I go to doctor then I have to speak in English, and I cannot speak English clearly. Whatever I told her, she understood differently; and what she said, I understood something else; in that context, we cannot express ourselves freely.””35-year-old Bengali-speaker, in Canada less than 5 years, Pap up to date through CARES“I don’t have small kids and my son is grown up so I did not feel that hard. If it was far from me, or.... If the doctor spoke another language then I would have a problem. Sometimes Chinese doctors don't understand me, nor can I understand them. Here my doctor was from my community and even the assistant was from my community so I did not feel any problem..”40-year-old Bengali speaker, in Canada less than 5 years, Pap up to date through CARESMultiple, parallel barriers often coexisted in navigating a new heath system, transportation, childcare, time away from work, and language. Competing priorities with work and childcare were of greatest concern for young Chinese mothers, whereas transportation, language, and cultural barriers were the challenges voiced by older unilingual Chinese women. Younger South Asian mothers also described limited mobility with their young children, especially during the Canadian winter as well as loneliness and social isolation. “I can not just get rid of the influence from the bad emotion, our social networking is so narrow, besides kids, there is only family - we are confined.” “Because women from our community have shyness, less familiar with travelling alone, and don’t want to go out.”“I don’t know a lot of people here. I am newcomer. After that I got pregnant, I had a baby. I am almost confined in the home all the time.”33-year-old Bangladeshi respondent, unknown time in Canada, Pap up to date.community hubs (i.e. apartment complexes and community centers) where newcomers could have screening services provided in their own language. They cited a tradition of community and group gatherings, and limited access to outside media, especially among older Chinese participants in support of this. Moving screening closer to the community would allow for older community members to come together socially, and for the younger women to assist each other with childcare. While the CARES peer leader model may have influenced this finding, some Mandarin speakers felt screening access is facilitated by having a Mandarin-speaking peer leader to guide the process, help with paper work and explain the screening procedures.“Last time, in Universal [University] Settlement, they have a mobile health bus, parking in the park, helped to check us, I feel it is very convenient.”60-year-old mandarin speaker, in Canada greater than 5 years, not eligible for Pap, Mammogram up to date“… it is better to make things convenient for women with kids. It will be ideal if we can just have it in the community, in nearby. If there is someone help with the kids, if will be easier. It is easier to be a daddy… To bring the kids to the community, there is someone helping to take care of the kids there, so we can socialize at the same time…”35-year-old Mandarin speaker, in Canada unknown time, Pap up to date“If you go to Bengali community, school, mosque, door to door. I think these two sectors are very important. You will get a good chance to talk with others or come closer to them. Yes, Mosques---my kids go to learn their Islamic education on Saturday and Sunday. When class ends then you will get some mothers there, also at schools after the class you will also get many mothers.”35-year-old Bengali-speaker, up to date on screening after CARES project, in Canada less than 5 yearsIn order to address these newcomer barriers and limited mobility of young mothers, informants of diverse age and culture suggested that primary care and screening outreach should be based in Generational differences were also highlighted in the context of multi-pronged approaches to reach other Chinese women in their communities. For example, communication strategies differed with age: younger Chinese women said they navigate the Internet and ask their peers for health information, whereas older Chinese women reported use of the radio. Language issues were magnified for older Chinese women.“I feel that kind of workshop is easier to understand. Also for people at this age, their English is not good. Because people who have high risk of cancer usually are not young people. Most of them are over 50. For people over 50, they do not speak good English, they do not know how to use the internet…Workshop and telephone communication is better way.”56-year-old Mandarin speaker, in Canada more than 5 years, screening up to dateImmigrant women in large urban centers have many insights to offer in relation to mammography and cervical cancer screening programs for women in their communities. Gaps in biomedical understanding of the strengths and limitations of screening, confusion of screening with testing for common breast complaints, and the unintended consequence of cancer-related worry, anxiety, and increased perception of cancer risk are not in any way unique to new immigrant groups –46 HowevA number of the ethno-specific findings on care-seeking beliefs and practices add to the existing literature on Chinese and South Asian groups in North America , 48. DisImportant opportunities for improving screening practices exist within the primary health care system. This study highlights the essential role of family physicians in supporting women in cancer screening. Opportunistic screening recommended by their primary care provider had been effective for a number of informants, demonstrating its importance in newcomer populations . AlthougA number of policy and planning priorities emerged from this study. A passive system historically relied on individuals to seek out both a primary care provider and screening. The Ontario Cervical Screening Program now sends reminders to women who have never had or are due for screening . LettersThere are a number of important limitations of this study. The predominant focus on two major immigrant groups provides results that may be most relevant to these groups. Resources are limited, however, and by exploring how their experiences are similar, we can help inform health system reform and program evaluations, and develop a general public health approach to reaching these groups. The majority our respondents were in fact up-to-date for their screening, a reflection of the selection bias of CARES program participants who were more likely to have a positive view of screening given their participation. Notwithstanding, all informants offered a window to their experience with screening and the perceptions of women in their community about screening. The influence of the CARES project itself could not always be controlled for. CARES peer leaders interviewed women, and the positive aspects of screening may be over stated due to social desirability bias . HoweverThis study of women of South Asian and Chinese origin provides valuable insight into the barriers and opportunities to improve cancer-screening coverage for all newcomers and existing under and never screened groups. Priority should be given to cultural-group specific outreach, opportunistic screening through existing primary care networks, and expanding points of entry to convenient community -based screening modalities.


Research has shown that the provision of pertinent health information to patients with cardiovascular disease is associated with better adherence to medical prescriptions, behavioral changes, and enhanced perception of control over the disease. Yet there is no clear knowledge on how to improve information pertinence. Identifying and meeting the information needs of patients and their preferences for sources of information is pivotal to developing patient-led services. This prospective, observational study was aimed at exploring the information needs and perceived relevance of different information sources for patients during the twenty-four months following an acute coronary syndrome.Two hundred and seventeen newly diagnosed patients with acute coronary syndrome were enrolled in the study. The patients were primarily men (83.41 %) with a mean age of 57.28 years . Patients’ needs for information and the perceived relevance of information sources were evaluated between 2 and 8 weeks after hospitalization (baseline) and during three follow-ups at 6, 12 and 24 months after baseline. Repeated measures ANOVA, Bonferroni post hoc tests and Cochran’s Q Test were performed to test differences in variables of interest over time.Results showed a reduction in information needs, but this decrease was significant only for topics related to daily activities, behavioral habits, risk and complication. At baseline, the primary sources of information were specialists and general practitioners, followed by family members and information leaflets given by physicians. Relevance of other sources changed differently over time.The present longitudinal study is an original contribution to the investigation of changes in information needs and preferences for sources of information among patients who are diagnosed with acute coronary syndrome. One of the main results of this study is that information on self-disease management is perceived as a minor theme for patients even two years after the event. Knowledge on how patients’ information needs and perceived relevance of information sources change over time could enhance the quality of chronic disease management, leading health-care systems to move toward more patient-tailored care.The online version of this article (doi:10.1186/s12875-016-0534-8) contains supplementary material, which is available to authorized users. Cardiovascular diseases (CVDs) are currently the largest single contributor to global mortality and will continue to dominate mortality trends in the future. Even though it is well known that modifiable factors related to lifestyle habits are major contributors to CVDs –5, patieDescribing what information is needed for cardiac patients, from whom and at which point over the course of the disease is necessary to provide meaningful insight on how to enhance rehabilitation programs for two main reasons. First, the length of hospital stays for patients undergoing various cardiac procedures has decreased in recent years, especially for patients who have been treated for coronary heart disease , 29. ActWhat are patients’ information needs and which information sources are perceived as more relevant over the twenty-four months following a cardiac event?What are the information sources from which patients receive health information over the course of the disease?What are the socio-demographic correlates of needs and perception of relevance of sources?The research questions of the present study were as follows:To be eligible for this study, subjects had to be newly diagnosed ACS outpatients involved in a rehabilitation program in one of three healthcare centers in Northern Italy; 30 years of age or older; able to speak and read Italian; without moderate-severe cognitive impairment, psychiatric disorders or diseases with limited expected survival.Physicians at the hospital referred patients to the study and those who met the inclusion criteria were invited to participate. Between 2 and 8 weeks after hospitalization (baseline), patients were told about the aim of the study and were asked to sign an informed consent form. They were also informed about the three follow-ups at 6 (t1), 12 (t2), and 24 months after baseline (t3). Later a physician collected clinical data related to: a) ACS ; b) the revascularization procedure  anthropometric data; d) blood pressure values; e) the presence of CVD risk factors  and f) pharmacological treatment. After the clinical examination, patients were asked to answer to a few questions by a trained researcher in order to measure their information needs and perceived relevance of information sources. This procedure was almost the same in all the follow-ups. The only difference was in the clinical examination: in fact, during the follows-ups further clinical information related to the number of a) specialist visits, b) emergency room visits c) new hospitalizations and d) new rehabilitation programs attended during the previous months were collected.This study was approved by the Ethical Committee of the University of Milan-Bicocca and of the healthcare centers from which patients were recruited.“Pharmacological Treatment”: information on the types of medicines to take, when to take them, and their possible interaction with other medicines;“Knowledge About the Disease”: information of the anatomical/functional nature connected to the disease ;“Daily activities”: information about daily life activities that can be carried out and which ones have to be modified ;“Behavioral Habits”: information about the habits that can be continued and those that should be modified ;“Impact of the Disease”: information on how to manage stress and worries that might be generated by the change in life caused by the disease;“Risk and Complications”: information about the risks related to the disease and possible complications .The information needs section comprised two questions evaluating the need for further information in one of six domains related to CVD management. These domains were:Indicate how much information you would like to receive about the following topics connected to the management of your cardiovascular disorders”). The answer format was on a five-point Likert scale ranging from one (“I want to know nothing about the topic”) to five (“I want to know everything about it”). The second question asked patients to rate the importance of the six domains and to assign a value from 1-6 . To identify the information needs, a balanced index was calculated by multiplying the score on question 1 by the score on question 2. Before computing the balanced index, the score on question 2 was reversed . The balanced index had a score range from 1-30 with higher scores indicating a higher need for that domain. This was calculated to control for patients’ tendencies to judge all information as “very” or “extremely” important. In fact, as found in previous research . Therefore, degrees of freedom were corrected using Greenhouse-Geisser estimates of sphericity . A repeated measures ANOVA showed significant differences in the relevance of all the sources between the time points, except for “Specialist”  = 2.26, p > .05); the direction of the change varied for the different sources , “Magazines”  = 3.28, p < .05), “Internet”  = 3.14, p < .05) and “Television”  = 6.41, p < .001) increased over time, while it decreased for “Family”  = 3.74, p < .01) and “Friends”  = 6.04, p < .001). A particular trend appeared for “Information Leaflets given by physician”  = 12.52, p < .001) and “Information Leaflets given by association  = 3.82, p < .01): between baseline and t1 the relevance of these sources increased significantly, but it decreased significantly between the other sets of time points.Regarding relevance, Mauchly’s test indicated that the assumption of sphericity had been violated for all sources [“GP”  and more information about “Daily activities”  and “Behavioral Habits” . Age was related to “Distress” , with older patients less interested in information on how to manage stress related to the disease. Gender was related to the need on information on “Risk and complications” , with female patients more interested in this topic.At baseline, patients with higher education levels wanted less information about “Pharmacological Treatments” (p = .020) and marital status  = 2.70; p = .045), with female and married patients who desired more information on this topic over time. The need for information on “Distress” was positively associated with marital status  = 3.64; p = .013), employment  = 1.92; p = .029) and age  = 4.65; p = .003).When the relationships between information needs and demographic variables were analyzed over time, the need for information on “Daily life activities” resulted associated with patients’ gender  = 3.30; β = .228, p < .01) and male patients  perceived that the information provided by this source was more relevant Age was also positive related to the perceived relevance of “Family”  and “Television” . Gender was positively related to the perception of relevance of “Information Leaflets given by Associations” , with female patients who perceived information from this source as more relevant. Patients with higher education levels perceived that the information from the “Internet” was more relevant , while patients with lower education levels perceived sources such as “Family” , “Information Leaflets given by Physician” , “Information Leaflets given by Associations” , and “Television”  were more relevant. Employment was related only to the perceived relevance of “Television” , with patients retired or unemployed who relied more on this source.Regarding information sources, age and gender were significantly related to the perceived relevance of “GPs”; in particular, older (p = .043). The perceived relevance of “Gp” resulted also associated also with age  = 2.82; p = .038), with older patients who relied more on this source. Marital status was positively related with the perceived relevance of “Family”  = 3.54; p = .014), “Friends”  = 4.89; p = .002), and “Information Leaflets given by Associations”  = 2.67; p = .047); married patients declared to perceive these sources as more relevant as the disease progresses.Results from repeated measure Anova showed that gender, age and marital status were related to the perception of relevance “Gp”, “Family”, Friend”, and “Information Leaflets given by Associations”. Gender was positively associated with relevance of “Gp”  = 2.72; This longitudinal study aimed to gain understanding of how the information needs and perceptions on sources of health information of patients with ACS may change over time in order to be able to better tailor information giving. To our knowledge, this study is among the first to quantitatively investigate in the ACS setting information needs and perceptions over time and which characteristics are related to a possible change in needs and perceptions.A reduction in information needs in all six domains related to disease management was observed, but the decrease was significant only for daily activities, behavioral habits, and risk and complication. For information related to drugs, knowledge about the pathology and on how to manage the distress, a non-significant decrease was revealed.A possible explanation of the overall decrease of patients’ needs is that immediately after their first cardiac event patients desire all of the information they can get to cope with the new situation and to manage the distress caused by the illness and the cardiac procedures they have undergone. Then, over time, this desire decreases with a gradual reduction in the disease symptoms and greater experience with the condition , 34, 35.Socio-demographic characteristics were partially associated with information needs and with their changes over time. In particular, being married was significantly associated with needing more information on behavioral habits and distress over time. This could arise from the fact that, in addition to their own worries and anxiety, patients have to manage their families’ distress. Spouses usually do not participate in the educational programs offered by hospitals and they may feel incapable of providing optimal support to their sick partners. As a consequence they could increase patients’ anxiety by their own apprehension. Perhaps patients’ high information needs also reflect partners’ needs for information on topics on which they could have a primary role. The informational topic related to the management of stress and worries caused by the disease was the one which was most related to sociodemographic variables over time; in fact, it was associated not only with marital status, but also with age and employment, with older patients who do not work (both for retirement and unemployment) who desire less information at the beginning of the disease and over time. These relationships seem to underline that younger patients are more aware of the dangerous role of distress for health and they experience a deeper burden related to the disease in comparison with older patients. Patients’ education level was significantly associated with information needs only at the beginning of the disease. In particular, highly educated patients wanted less information about pharmacological treatments and more information about daily activities and behavioral habits. This could reveal greater knowledge about the treatment as well as a greater understanding of their crucial role in the disease management. Other relationships arose at baseline between being female and desire more information on daily life activities and risk and complications of the disease. This result is in line with some evidences in research, which suggest a non-participatory role adopted by men and older patients in the management of their illness and a greater desire for information in women , 39, 40.Regarding information sources, both the repeated measures Anova and the Cochran Test show similar results. Patients reported having received information from GPs in a higher amount over time and perceiving this source as more relevant during the follow-ups. These results may be explained by an increase in the number of consultations over the course of the disease. In fact, it is unlikely that immediately after a cardiovascular problem patients interact with a GP, except for drug prescriptions. After the discharge patients tend to consult the specialist less and mainly refer to the GP for any advice on disease management. The relevance of the specialist does not increase over time, most likely because of a ceiling effect: patients indicated high scores for the specialist at baseline, making it impossible to score significantly higher on the follow-ups. The relevance of “Magazines”, “Internet”, and “Television” increased over time; in addition, the results show that patients received significantly more information from these sources as the time passed, maybe due to a more active role of the patients after discharge; it is possible that in the first few weeks/days after the heart attack, they follow the lead of specialists without actively searching for autonomous additional information. Then, with a reduction in the medical examinations, patients may pay more attention to other sources. However, it is important to note that the scores for these sources, together with information leaflets given by associations and friends do not reach the 2.5 level, indicating that these sources are not perceived to be highly significant. Regarding family and information leaflets given by physicians, their relevance decreases after twelve months, showing that these sources are perceived as mildly relevant only at the beginning and in the few months following the disease. Surprisingly, we have not observed the Internet to be of great importance in informing patients about health, even though there is a significant increase in the use of this source. Maybe the perceived lower relevance of the Internet could be explained by the characteristics of our sample: patients participating in this study had a mean age of 57 years, and more than 26% of them were retired; they may thus not be familiar with computer and Internet use and prefer to use simpler sources to gather information. This hypothesis is confirmed by the significant relationship between education level and the perceived relevance of this source. In addition, Italy lags behind other countries in the use of the Internet  and thisEven for the relations among sociodemographic variables and sources of information, multiple patterns of relationships emerged at the beginning of the disease and over time. In particular, at baseline, age, gender and education influenced patients’ perceptions, with male, elderly and low educated patients who rely more on the information provided by general practitioners, family members, television, and information leaflets. Some relationships between sociodemographic variables and patients’ perceptions remain significant over time; in particular, marital status was related with the perceptions of relevance of friends, family and information brochures, with married patients that perceive these sources as more relevant as the disease progresses. Such patients seem to prefer “traditional” ways to obtain information, like direct discussions with physicians or other people, written take-home information, or videotapes, maybe because these sources are more reassuring and allows them to take some control over their health .The definition of how patient needs and perceptions change during the course of a chronic disease provides information upon which to inform and guide future research and facilitate information provision based on the preferences set by the patient, relevant to their individual situation and context. These findings present an opportunity for healthcare practitioners (HCPs) to be aware of their patients’ information needs and be able to recognize how much information their patients may require in each moment of the disease.currently, HCPs invest much effort in information giving at the initial moment of an ACS. From a secondary prevention point of view, the results from this longitudinal study suggest that it is also necessary to shortly explore the patients’ information needs at every follow up visit and not only during the hospitalization for an acute cardiovascular event. In particular, it is important to constantly provide patients with information about pharmacological treatment, clinical aspects connected to the disease and recommendations on how to better manage stress and worries generated by the disease;furthermore, HCPs should deepen the underlying reasons of the constant decrease of the need for information related to behavioral habits. If this decrease is a consequence of patients’ incomprehension of the importance of lifestyle in maintaining health, it is important to find new and more fitting ways to deliver this kind of information. In particular, it could be rethought the role of general practitioners; the results of this study, in fact, show that the relevance of this source of health information increase over time. GPs should be provided of instruments (primarily the appropriate time) to better guide patients in the self-management of the disease;although magazines, internet and television were scored as less relevant in comparison with other sources, their increased relevance over time suggests a greater participation and interest of patients in the process of obtaining information. This result could be used by HCPs as an incentive to use these sources as powerful tools in delivering health information.As such different recommendations emerge:The limitations of this study mainly pertain to three aspects. First, the sample was composed of patients involved in cardiovascular rehabilitation (CR). CR is a comprehensive outpatient risk reduction program that aims to improve capacity and quality of life giving patients the tools to optimally self-manage their condition. During CR, patients attend multiple courses that involve lifestyle habits as well as psychosocial factors. It is possible that exposure to CR affected patients’ perception of the importance in disease management of specific health domains influencing their needs. Therefore, the results here presented may not apply to patients who do not participate in CR. Second, 85% of participants were men. Although heart disease is often considered a problem for men, CVD is the second-leading cause of death in women 45 to 64 years of age . Thus, fThe information needs and the perceptions on different sources of information of patients with ACS change as the disease progresses. Taking into account these changes is pivotal to develop patient-led services and to enhance the quality of chronic disease management, leading health-care systems to move toward more patient-tailored care. Findings from this study have the potential to inform and guide HCPs, in particular general practitioner which are perceived ad more relevant as the time passes, on how to better provide health information to patients throughout the entire course of a chronic disease.


The article by Daniels and colleagues on expanding the scope of health technology assessment (HTA) to embrace ethical analysis has received endorsement and criticism from commentators in this journal. Referring to this debate, we examine in this article the extent and locus of ethical analysis in HTA processes. An expansion/no-expansion framing of HTA is, in our view, not very fruitful. We argue that meaningfulness and relevance to the needs of the population are what should determine the extent of ethics in HTA. Once ‘relevance’ is the guiding principle, engaging in ethical analysis becomes inevitable as values are all over the place in HTA, also in how assessors frame research questions. We also challenge dividing the locus of ethical analysis into assessment and appraisal as this would detach HTA from its purpose, ie, supporting legitimate decision-making. Ethical analysis should therefore be considered integral to the HTA process. Expanded HTA: Enhancing Fairness and Legitimacy,”1 has set forth a debate accompanied by a number of successive commentaries in this journal.6 The debate addresses a core issue regarding the role of health technology assessment (HTA) for legitimising decisions on health interventions. Central to the debate is a call to broaden the scope of HTA to embrace social and ethical issues such as equity and distributional impacts. The discussion also touches a longstanding, still unfinished, debate on the locus of such analyses within HTA processes: whether ethical appraisal of a health intervention is – in terms of content – separate from its technical assessment or interwoven with it. In this article we contribute to this debate with a view to examining the extent and locus of ethical inquiry in HTA.An editorial by Daniels and colleagues entitled, “2 involves the underlying assumption that we are deviating from a pre-existing assessment framework already demarcated by a specific discipline  and generally agreed upon within the HTA community. This view inevitably demands identifying where the boundary of expansion lies. For instance, in disagreeing with the suggestion of Daniels and colleagues to consider “matters other than safety and cost-effectiveness” in HTA, Culyer draws a line of ‘unnecessarily’ expanding HTA.As we see it, “expansion” involves a problematic framing for the scope of HTA. Expansion entails surpassing a boundary. Likewise, a ‘no-extension’ argument, as Culyer makes,5 of analyses. As a tool to inform decision-making regarding health interventions, HTA must remain user-centred in the same fashion that airlines services must be tailored to the needs of passengers or health services to those of patients. The extent of an assessment  should, in turn, be fit for the purpose of ‘legitimising decisions,’4 from both a practical and an epistemological point of view. A fit-for-purpose HTA is neither reductionistic nor unnecessarily exhaustive in terms of types of disciplinary perspectives, stakeholders involved, and the application of algorithmic calculations or deliberative processes. In a similar vein, an extensive elaboration of general ethical principles may in certain circumstances be rendered unnecessary, as equally may sophisticated modelling techniques. Notwithstanding, the health intervention in question should determine the content of HTA.2We reject a by-exclusion framing of HTA arisen from such an expansion/no-expansion argument, be it per domain or discipline, by calculation or deliberation, academic or non-academic, or otherwise. In our opinion, ‘meaningfulness and relevance’ to the needs of the population must be the prime criteria for determining the extent of HTA and for ‘sufficiency’integral to HTA processes. For example, HTA influences how pooled, but scarce resources eventually address the needs of the population; and the selection and/or exclusion of issues to address in HTA reports has normative bearings.7 If no significant ethical issue is conceivable for the health intervention at hand, an elaborate ethical analysis may not be necessary . Note: this is an if-clause. To ascertain the conditions of this ‘if,’ the assessor will inevitably have to examine budget, distributional, and financial protection impact. Nevertheless, several surveys and reviews show that HTA reports seldom explicitly address ethical issues.12 Some commentators in this journal reiterate this and endorse the integration of ethical analysis, including equity and fairness considerations into HTA. Culyer, however, argues that not all HTA reports need ethics; and that unveiling all specific ethical judgements would, in fact in itself, be unethical.2 We agree with Culyer and others who assert that not all ethical aspects of all health interventions have to be addressed for every HTA.13 Ethical analysis is, again, better conceived in accordance to the ‘relevance’ argument. This would also prevent inconsistency, eg, claiming that the job of assessors is to “populate the HTA process with ideas and evidence,” while regarding the equity and distributional impacts of the health intervention as “excessive.”2Once ‘relevance’ is the guiding principle, it must be justified with adequate reasoning. Engaging in ethical analysis then becomes inevitable, thereby, 10 Nor does this preclude one from examining all the value judgements underlying calculative assessments, including the relevance of cut-off points, outcome measures, time frame, indirect medical costs or costs outside the health care system, cost-effectiveness thresholds, and trade-offs between advantages and disadvantages of different measurement methodologies, to name but a few.14 These choices and assumptions are often not made explicit in an HTA report. They, however, could nontrivially influence patterns of utilization and eventually resource (re-)distribution. The devil would then be in these details, challenging Culyer’s idea of the intrinsic innocence of the tool: “Frequently what is wrong is not the tool but its users or the environment….” Are not you then engaging in an ethical analysis with regard to justifying the scope and tool of the assessment? This is indeed separate from the fact that equity considerations in resource distribution are partly captured by “a correctly-perceived idea of cost-effectiveness analysis in health care.”2Moreover, the fact that ethics is already embedded in HTA processes – notably in terms of minimizing opportunity costs – does not guarantee adequate ‘ethical reasoning’ or ‘social learning’ .2 In saying that HTA should not become prescriptive, Culyer notes that (a) scientific evidence should not be the ‘sole basis’ for making decisions and (b) responsibility and discretion rest on the decision-maker rather than the assessor. We agree and re-emphasise these points. However, we strongly doubt whether aiming at minimal ‘meddling’ with the job of decision-makers renders the assessments relevant or well-reasoned. The calculative assessments may either lose practical relevance or they may be regarded by the decision-maker and the public as prescriptive, not because their evaluative scope is adequate, but since they carry the connotation of being impartial or objective.15 Acknowledging and explicitly addressing ethical issues along with technical assessment provide the decision-maker with a more balanced/nuanced input for deciding on a certain course of action. Rather than prescriptively limiting the choices, such an ethical analysis clarifies existing choices made and the consequences thereof, even if it does not open up previously-neglected choices. It also feeds rather than discourages evidence-informed deliberative processes.16Ambivalence exists about where ethical issues should be handled: is it the task of decision-makers or do we want most of them integrated in HTA analyses? The same commentator, who argues that HTA frameworks should allow decision-makers to consider “all relevant, quantitatively and ethically significant issues,” also asserts that “[i]t is not necessary – indeed it is unethical – to prescribe all the specific ethical judgments that may have to be made. That is not the job of analysts but of decision-makers and their advisers.”17 Such division could be incongruent with the relevance argument. To those who promote this division, it should not matter if the conclusions of the assessments – having been pushed in an algorithmic direction18 – are ignored. It would, then, be defeating the purpose to expect legitimisation and transparency of decisions by means of HTA, while at the same time believing that assessors are only there to deliver evidence at the door. This leaves a lot of room for a decision-maker’s ad hoc personal feelings/expedience/interest, raising the question of why HTA is needed in the first place. Making decisions to optimize value10 is indeed the authority and responsibility of decision-makers, its ‘relevance and reasonableness’ however, relies on the work of assessors. The choice is, as Daniels and van der Wilt put it, “between HTA remaining a source of incomplete advice…, thus risking an important kind of marginalization, and HTA…to provide as complete an assessment of a technology as possible” (p. 12).10 You may have to choose: keeping your hands off or having an impact, because if HTA wants to have an impact on decisions, its hands may very well become openly involved.It is widely acknowledged that the division between assessors and decision-makers, between fact (assessment) and value , and between technocratic and political legitimisation has made HTA processes fall short to properly address ethical issues.We argue that the relevance to the decision at hand is what should determine the content of HTA. Ethical underpinnings of cost-effectiveness analyses do not, in themselves, assure adequate ethical reasonableness in an HTA. Ethical analysis is integral to the whole HTA process as it contributes to how HTA is defined, interpreted, and acted upon. It includes equity and distributional considerations but also all value judgments inherently involved in assessments. To examine the extent and the role of ethical analysis in HTA, we may need to make up our mind: becoming detached from or catering to the needs of the population.Not applicable.Authors declare that they have no competing interests.PA drafted the manuscript. All authors then contributed to the concept and writing of the article.1National Health Care Institute, Diemen, The Netherlands. 2Department of Health, Ethics and Society, School CAPHRI, Maastricht University, Maastricht, The Netherlands. 3Ecorys Nederland, Sector Health, Rotterdam, The Netherlands. 4The Norwegian University of Science and Technology (NTNU), Gjøvik, Norway. 5University of Oslo, Oslo, Norway.


Animal welfare is an important issue for citizens in North America and Europe, but much less is known about how citizens from emergent countries, such as Brazil, view this topic. Our aim was to explore attitudes of urban Brazilian citizens about dairy production and, in particular, how they view four routine husbandry practices: early cow-calf separation; zero-grazing; culling of the newborn male calf; and dehorning without pain mitigation. Through in-depth interviews and a questionnaire using open-ended questions, we can conclude that animal welfare was a major issue for our participants, especially in terms of its perceived relation with milk quality. Although participants were initially unaware about any of the four management practices, they were all viewed as contentious and not supported. This study provides some insights that farmers and others working in the Brazilian dairy supply chain should take into consideration, particularly in terms of social sustainability.The primary aim of this study was to explore attitudes of urban Brazilian citizens about dairy production. A secondary aim was to determine their knowledge and attitudes about four potentially contentious routine dairy cattle management practices: early cow-calf separation; zero-grazing; culling of newborn male calves; and dehorning without pain mitigation. To address the first aim 40 participants were interviewed using open-ended semi-structured questions designed to probe their views and attitudes about dairy production in Brazil, and 300 participants answered a questionnaire that included an open-ended question about the welfare of dairy cattle. Primary concerns reported by the participants centered on milk quality, which included the rejection of any chemical additives, but also animal welfare, environmental and social issues. The interviewees rarely mentioned animal welfare directly but, when probed, expressed several concerns related to this topic. In particular, participants commented on factors that they perceived to influence milk quality, such as good animal health, feeding, clean facilities, and the need to avoid or reduce the use of drugs, hormones and pesticides, the avoidance of pain, frustration and suffering, and the ability of the animals to perform natural behaviors. To address our second aim, participants were asked questions about the four routine management practices. Although they self-reported being largely unaware of these practices, the majority of the participants rejected these practices outright. These data provide insight that animal welfare may be an important issue for members of the public. Failure to consider this information may increase the risk that certain dairy production practices may not be socially sustainable once lay citizens become aware of them. Over the past 50 years, animal advocacy groups and concerned citizens have increasingly questioned intensive animal production practices . In someGiven that these changes can also create upheaval for the farmers, it is important that we continue to try to understand how the public views farming practices. Clearly, if we are able to anticipate practices that may be potentially contentious, then we can arguably pursue sustainable options that work for the farmers, the animals and resonate with societal values . FailureLittle is known about the views of citizens from developing countries, such as Brazil, regarding animal production systems , specifiOur overall aim was to explore attitudes of Brazilian urban citizens about dairy farming. Using a convenience sample we performed two studies, both designed to gain insights into what Brazilians viewed to be an ideal dairy farm. A secondary aim was to assess awareness and acceptability of four potentially contentious husbandry practices routinely used in dairy production.This study used a mixed methods approach, which combines collection and analysis of quantitative and qualitative data with the aim to provide greater understanding of a research problem than would be possible when using only a single method . The firn = 40) was based on the criterion that the sample size must be sufficient for the responses obtained to provide content diversity and richness regarding the issue of the study, and that the addition of more participants does not increase the diversity or richness of the sample, referred to as saturation [We used a convenience sample of Brazilian urban citizens that were 18 years or older, self-identified as not being involved in dairy production, and balanced for gender. The number of participants interviewed  were informed of the purpose of the research, and presented with a printed consent form. Upon signing the consent form, and after participants were assured that their participation would remain anonymous, they were given the questionnaire. The same demographic questions as outlined above for the in-person interviews were also asked in the questionnaire, followed by an open-ended question: In previous research done by our team, some people have told us that an ideal dairy farm should pay attention, among other things, to the welfare of their animals. If you agree with that statement, can you tell us what you would expect of a dairy farm that takes care of the welfare of their animals? Consider, please, the cows and their calves. On a separate page, and after answering the open-ended question, participants were invited to answer closed questions structured to determine whether they were aware of (yes/no) and position (support to oppose) using a five point Likert scale, regarding four routine management practices used on dairy farms. The specific practices were presented in simple, short sentences, as follows: cow-calf separation, the newborn dairy calf is separated from its mother shortly after birth; zero-grazing, on some dairy farms cows are reared inside barns, without access to pasture at anytime when lactating; culling the newborn male calf, some male calves are killed immediately after birth because they are not used to produce milk; dehorning/disbudding, the horns of young calves are removed without use of any medication to control the pain. The order of the practices was randomized among participants. Open-ended responses were transcribed into a digital document by the lead author.Participants .By design we did not include any participants in both studies that self identified as having some involvement in dairy production. We also intentionally targeted individuals such that our group of participants in both studies were balanced for gender, and were similar in terms of representing the age classes in the latest Brazilian census . The majInterviewees’ main concerns revolved around assurances of high milk quality and absence of chemical additives to the milk, both justified as important considerations for people’s health. Interviewees also said that on an ideal farm, animals should not suffer, and that the environment and the employees should be respected. The ideal dairy farm should also be profitable, the main reasons being farmers’ quality of life and the country’s economy.as few chemicals as possible (S1–32); Antibiotics are always harmful to health, not only for the people but also for the animal (S1–11). Interviewees also talked about the role of animal feed in the context of milk quality. Most interviewees mentioned feed quality, considered pasture or natural feed as the ideal, e.g., I believe that ideally cows should eat natural things—that would be pasture. Natural would be better because I believe that the cow would not necessarily produce more milk, but would produce better milk (S1–7). However, one interviewee associated concentrate with better milk quality, i.e., Confinement, concentrate, are good for milk quality (S1–5). Some also related animal health to milk quality, e.g., Because if the animals are not well the product won’t be as good as it could be (S1–17). Absence of agrochemicals and transgenic components in the pasture was also mentioned in relation to milk quality, e.g., Agrochemicals are used to produce pasture and this goes into the meat and milk. They should be used in a way that doesn’t harm humans (S1–18).Regarding milk quality, interviewees described the ideal farm as a place that must respect hygiene and be clean. There was an expectation that the milk be produced without the use of added hormones and antibiotics: No suffering for the animals at milking (S1–9); With animal welfare, animal comfort; let’s say a happier animal, something like that (S1–26), and that animals should be well cared or well reared, which could mean well fed, good space, freedom (S1–6). Individuals also expressed their desire that animals be provided enough space: Animals with adequate space, because I saw that some of them are tied and I think this is outrageous because nobody likes to be confined. Nobody was made to be confined, not a bird, not a cow, not anybody, not us, nobody likes it. And I think a cow mustn’t be happy there (S1–11); It is shocking that cows are not on pasture they must be free, because like it or not, it is an aggression towards the animal; she works the whole day, no time off, this is an aggression towards the animal, I think (S1–6). For some interviewees, the way animals are treated results in better milk quality, e.g., If the animal has a good quality of life, the product will be better (S1–20). In this context, it was mentioned that employees should be trained, and family farms were identified as the best option, because the farmers are in the best position to care for the animals: because the (family) farmers live closest to the animals and provide them with humane treatment, like giving them a name; this treatment, I think, also influences the product (S1–2). The use of hormones was also related to the animal’s health, Because I think they harm the animal’s health. I think they cause tumors or something. I do not see them as a good thing (S1–40).There was a high expectation by the interviewees that there be an absence of animal suffering, i.e., many cows on pasture because its natural its closer to nature, they can feel better (S1–10); natural food as it was at the beginning of Creation, green pasture (S1–29). Some showed negative attitudes towards modernity and technology in terms of equipment, and related these features to loss of naturalness: Something more manual and not so much machinery (about milking) (S1–2); I don’t think it’s necessary (machinery), it’s not good because it’s not natural (S1–10); I think anything that is too industrialized brings some harm to our health. I think this kind of milk is too pasteurized. I think the best is natural milk, as more natural is better. More natural milk, even if it lasts less, it is better (S1–26). A few interviewees associated the lack of naturalness, the use or presence of chemicals, and recent diseases to milk consumption: I remember when I was a kid, my mother used to say that milk was a very healthy food. And today it isn’t anymore. So what happened between then compared to today for milk not be healthy anymore? Because you see information that milk has fat, this and that and that today everyone is allergic to lactose. So, I've been wondering what has happened. Could it be that in our time the way milk was produced was healthier than it is today? (S1–31); when reflecting to the importance of chemicals added in the milk, the same interviewee concluded: Why not using the most natural way possible? We know that’s good, because it’s natural (S1–31).Naturalness was also an important characteristic raised by the interviewees; many were concerned with the animals’ feed, and pasture-based systems were considered ideal because of their naturalness, e.g., Ideally, a farm should not need subsidies (S1–3). Some mentioned that if a farm is profitable farmers might generate employment. The export of milk products and production of special products, for example without lactose was also discussed. Aspects of animal management, including cows’ access to water, good feeding, health and housing, genetics, and even music in the milking parlor, were discussed in the context of increased production and profit.Profit was another major concern raised by the interviewees. They discussed the importance of profit for farmers’ livelihoods and way of life, the country’s economy, and the economic sustainability of the industry: These days I have read that animals suffer a lot (S1–40) and cited sources where they gathered information such as television and the Internet. Many started the interview saying they did not know anything about dairy farming, and for this reason they had no idea how an ideal farm should be, but as the interview progressed they did convey, to some degree, what they expected in a dairy farm. For example, one individual began by asking a question and then immediately went on to answer: The animals are confined, right? I think I agree more or less with this way. I don’t know if it could be much better. It could be but I can’t imagine how. Maybe with animals not confined in such small spaces, something like that (S1–25). Others revealed that they did not like what they imagined a dairy farm to be: Everyone knows it’s a real production line (S1–2); Back in the day the cows produced milk without concentrates, today there are concentrates, but we don’t know what they are made of. Some say that they have chemical additives, others say they don’t, I don’t know to what extent this is true because we are in an environment with lots of information and we don’t know what information is correct (S1–31).Some interviewees commented that they would like to have more knowledge about how animals are reared, and a few of them commented on their sources of information, e.g., I don’t know which sorts of preservatives are put into the milk to allow it to stay in contact with aluminum. Lots of studies say that aluminum is not ideal for food preservation. Because aluminum is carcinogenic (S1–7); or that the industry is not truthful in its presentation of the image of dairy farming: Confined, I suppose that’s how it is. I think it is a utopic, naive thing to think that cows are kept as you see in the ads or on the box of milk, a cow’s picture on pasture, free and happy... I don’t think so (S1–40). One interviewee said that because of this, consumers prefer not to think about the origin of the product that they consume (S1–2). Many interviewees talked about government inspection of commercialized products, e.g., I think there should be more government oversight of the milk trade. The milk leaves the farm and we don’t known how it is preserved, how the storage places are (S1–7), usually recalling recent cases of milk adulteration in Brazil: Some of my friends do not drink milk from some companies, and others do not drink milk at all, because of the (cases of milk) adulteration that have been reported a lot lately (S1–14).Many interviewees declared some discontent towards the dairy industry, saying that they did not know whether people still drank milk or what the industry added to the milk, i.e., The 228 responses collectively resulted in 4994 words (on average each response was 22) that were then coded into four themes . Many reAdequate feeding for the cows (S2–88); Healthy feeding for the animals (S2–103); Nutritious pastures for milking cows (S2–191). Some participants provided more general responses calling for adequate animal facilities, while others were more specific, citing hygiene and cleanness of facilities: Adequate housing (S2–182); with excellent hygiene conditions (S2–19). Good health and veterinary care were also cited, e.g., Animal health care (S2–158). Participants also mentioned access to drinking water and shade, thermal comfort, and access to shelter: Natural shade, if possible, and high quality water available (S2–1); (The farm) must have a place for animals to protect themselves from the sun and rain, where they can sleep and eat, and provided adequate veterinary care (S2–7); Adequate thermal conditions (S2–31).Questionnaire participants were primarily concerned about the feed given to the cows, e.g., ethical management (S2–75). Participants expressed concern regarding animal mistreatment and, in their opinion, animals should receive adequate management, should be treated well, and mentioned quality of life, being careful with the animals, avoiding aggression and mistreatment (S2–18); Adequate and decent dairy cows’ management (S2–14); I’d hope all animals are cared for with the same level of care as humans (S2–22). Some expected audits to ensure that handlers treated animals well, e.g., In my opinion there should be a more rigorous oversight and animals should be treated the best possible way (S2–2).Most participants associated animal welfare with the quality of treatment given to animals or, in their words, Adequate treatment to animals, without mistreatment, which also results in better product quality and productivity (S2–30); All animals must be respected and loved, so their production increases (S2–28), and in better product quality: I hope animals are well cared for, so the products have better quality (S2–167) and consumers’ health: Cows’ welfare is reflected in product quality, with evident consequences for our health (S2–23).For many participants, good quality treatment results in more production, e.g., With animals free within nature (S2–47); Animals that live with freedom (S2–122); Not limiting animals’ freedom. allowing a normal life cycle. (S2–213); Pastures free of pesticides, as natural as possible (S2–183); That cows were not forced to give birth constantly to sustain milk production (S2–47). Other respondents commented about the way animals are reared; that cows should graze in large, open spaces, or should be fed pasture and more natural, less industrialized, or organic feed, e.g., I hope animals to be grass-fed, not grain-fed (S2–157); Cows reared on pasture (S2–200). Some participants specifically rejected indoor housing, e.g., Animals should not be confined (S2–32); Not under radical confinement; some freedom to move and the possibility to graze (S2–109).Additionally, some participants related the ability of animals to express natural behaviors, e.g., Pasture without pesticides, as natural as possible (S2–183); Without artificial stimuli to increase production (S2–19); Without products to accelerate growth (S2–201); I’d expect them feed the animals without pesticides and hormones (S2–151); A farm that offers organic feed to its animals (S2–114); To avoid too many medicaments (S2–170). One reason for this rejection was the perception that some of these substances could affect the health of animals, e.g., The use of veterinary phytotherapic drugs, to avoid contaminating the animals (S2–14), but also the consumers: The volume of chemicals present in the milk cause health problems to consumers (S2–185).Concerns about natural production were associated with criticisms regarding excessive or inadequate use of chemical products, e.g., Never inflicting pain to animals (S2–27); There should be at least anesthesia to remove the horns (S2–149); I’m not in favor of any kind of mistreatment and managements that cause pain or suffering (S2–50). Also animals should be happy and comfortable, e.g., A well cared for animal is a happy animal (S2–46), including playing music for the cows, e.g., Using classic music during milking (S2–6). A few participants  mentioned early cow-calf separation, e.g., That cows and calves be allowed to live together (S2–51). Some argued that the cow and calf should spend at least some time together, or that farmers should be more careful with calves because the cows are supposed to produce milk for the calves.Some participants also mentioned the emotional lives of the animals, stating that they should live without stress, frustration, suffering, or pain, e.g., I totally ignore how a dairy farm works, but I believe that it should be designed to benefit all animals, environment and humans (S2–13); As I’m not expert in the subject, I don’t know what resources are needed, but as for my concern, it is with the volume of chemicals inside milk that cause health problems to the population (S2–185); I don’t know how a dairy farm works, but I believe that all efforts must be made so that the animals don't suffer or feel pain; there must be quality of life (S2–221).Regarding how informed the questionnaire participants considered themselves to be about dairy production, 2% said very informed, 24% somewhat informed, 13% intermediate, 27% somewhat uninformed, and 34% totally uninformed. In the open responses 10% of the participants addressed their own lack of knowledge of the proposed topic. For example, some said they had never thought about a dairy farm or the welfare of the animals or had no idea how a dairy farm works but nonetheless most expressed several opinions, e.g., Most participants answered that they were not aware of the four described practices commonly used on dairy farms. However, once they were made aware of the practices, most rejected them . AwareneThis study provides insights about the knowledge and expectations of Brazilian lay citizens regarding what an ideal dairy farm is, and the welfare of dairy cattle living on Brazilian dairy farms. Most participants were unaware of the four specific practices that are commonly done on dairy farms; more importantly, once they became aware they overwhelmingly rejected these practices. Although interviewees described an ideal dairy farm and were in many cases not knowledgeable about dairy farming, they did cite characteristics related to a farm as a whole such as milk quality. Many also discussed animal welfare as an ethical requirement, and that profitability of the dairy farm was essential for social reasons.Not surprising given the knowledge base that the participants had about dairy farming, they frequently mentioned animal welfare as a broad concept but rarely explored specific aspects about dairy farming that they thought influenced animal welfare. However, when probed specifically about animal welfare the participants in our study brought up similar issues and concerns as other citizens from other countries ,29, withConcerns relating to biological functioning and health are frequently raised as the most important aspect of animal welfare by farmers and veterinarians ,32,33 buNaturalness, another concern expressed by many participants in both studies as they discussed animal welfare, was expressed in terms of preference for production systems that allow for natural behaviors such as grazing, and access to space. This may be driven in part by the on-going discussion regarding restriction of movement in the pig and egg industries, which have both received considerable attention in the public domain in Brazil . The desreturn to the past suggested by some participants of this study has been discussed by Fraser [Some participants expressed a desire for traditional, less industrialized farms. This rejection of technology in dairy production systems may be explained by an association with problems identified concerning the welfare of other domesticated animals such as pigs and chickens, rural communities and the environment, brought by industrialization of animal production and confinement systems . Indeed,y Fraser  as a romy Fraser  reportedy Fraser ,54, and y Fraser ,55.Many participants in both studies discussed the ethical treatment of animals as good quality of treatment, absence of pain, suffering and stress. This was somewhat surprising given that most identified themselves as being largely uninformed about dairy farming. However, this may be explained at least in part by the growing presence of animal advocacy campaigns exposing contentious practices in farm animal production systems, including dairy production, and the repeated replication of the issues raised in these campaigns in television programs and social media in Brazil ,57,58,59properly or adequate frequently used, rather than specific terms or references to specific practices and their outcomes. Not surprisingly given their background, most participants had low awareness of the four common dairy management practices described in the questionnaire [Across both studies more than half of the participants self identified as having little or no knowledge about dairy farming, an issue also raised by many of the participants in their responses. Their lack of knowledge was also apparent in the words they used to describe their ideal dairy farm, with descriptors such as ionnaire ,61,62,63ionnaire ,64,65,66ionnaire ,68.Some have argued that the agricultural industries must place greater efforts in educating citizens about farming practices as a means to improve understanding and acceptance of some contentious practices ,53,69,70The ideal type of production system was also discussed by many participants, with some rejecting indoor housing and concentrate feeding, while others describing an ideal farm as one with open spaces and animals grazing on pasture. Most interesting is that in both of these later arguments participants cited naturalness and animal welfare when justifying these characteristics. Some have argued that pasture access for dairy cattle provides benefits for animal health and welfare, while others have argued that indoor housing reduces dairy cattle health and the ability of the animals to express natural behaviors (reviewed by ).There is tremendous potential within Brazil to produce pasture-based milk, given the favorable climatic conditions throughout much of the country . InteresSmall farms, which are largely family run, have an important role in the Brazilian milk supply chain because they produce a substantial amount of the total milk produced in the country . If the The convenience sample used in this study should not be considered representative of the Brazilian population, given that the higher level of education of the respondents and the distribution within regions of Brazil was not representative. However, the findings herein do represent the ideas of a group of mixed sex, urban, well-educated middle class Brazilian citizens that spanned a variety of ages. Although having a higher socio-economic status can result in greater emphasis being placed on animal welfare regulations by citizens, it was not an aim of the present study to elucidate the effects of socio-economic status on attitudes and views pertaining to farm animal welfare. The methods used in the current study assumed that citizens drive changes on food production, not consumers (see Aerts ). MoreovWhen the participants were invited to imagine a dairy farm they showed a special concern for milk quality, but also mentioned the social importance of dairy farming and animal welfare. The participants that were prompted to give their opinions about animal welfare made associations with the quality of cows’ treatment , good animal health, feeding and hygiene, the ability of the animals to perform natural behaviors, and the need to avoid or reduce the use of drugs, hormones and pesticides. The majority of participants in this study were unaware of farming practices of early cow-calf separation, zero-grazing system, the culling of newborn male calf and dehorning/disbudding without pain mitigation, but when made aware overwhelmingly rejected these practices. These findings suggest that participants of this study were mostly unaware about common animal production practices but were highly concerned about milk quality and animal welfare. These studies provide insight that animal welfare is indeed important to some members of the public, as was the case for our group of highly educated urban middle class Brazilians, and there is risk that certain routine dairy production practices may undermine the socially sustainability of this industry once the public becomes aware of them.


Dear editor, Today, although information is easily transmitted, knowledge generation still limited to universities and large laboratories that use specific communicate channels to diffuse their science. In the era of Big Data, a great amount of time is lost when scientists move to specific places to obtain knowledge and, then, diffuse it when return to their home country/city. The amount of digital data created every 2 days is an exabyte (1 billion gigabytes), the same amount of data produced by the society up to 2003. For this reason, many knowledge generators, the so-called “citizen scientists”, who are volunteers and do not work at large research centers have been contributing to broad knowledge by recording, for example, plants, animals, and even new stars and planets. “Citizen science” is breaking traditional models of science communication and favor those who were prevented to participate in science because they do not domain scientific discourse. To facilitate science communication of the current huge amount of information available, scientific journals should create a new section: collected data. The author intellectual property would be preserved by attribution of Digital Object Identifier (DOI®) to the published material. This model would improve knowledge diffusion in the era of Big Data, empower “citizen scientists” and benefit the society.In medieval times knowledge was limited to monastic libraries and access was not granted to the society. In 18th century, scientists used to travel to different countries to communicate their science in public lectures. In the same century, science become an institutionalized and professionalized activity, but it was restricted to limited communities.1 Toda