Background: High compliance to infection prevention and control (IPC) is vital to prevent health care-associated infections. In the worst 2014–2015 Ebola-affected district in Sierra Leone (Kenema), we assessed (a) average yearly IPC compliance (2016–2018) using a National IPC assessment tool in the district hospital and peripheral health units (PHUs), and (b) gaps in IPC activities, infrastructure and consumables in 2018. Methods: This was a cross-sectional study using secondary program data. Results: At the district hospital, compliance increased from 69% in 2016 to 73% in 2018 . Compliance for screening/isolation facilities and decontamination of medical equipment reached 100% in 2018. The two thematic areas with the lowest compliance were sanitation (44%) and sharps safety (56%). In PHUs (2018), the minimal 70% compliance threshold was not achieved in two (of 10 thematic areas) for Community Health Centers, four for Community Health Posts, and five for Maternal and Child Health Units. The lowest compliance was for screening and isolation facilities (range: 33–53%). Conclusion: This baseline assessment is an eye opener of what is working and what is not, and can be used to galvanize political, financial, and material resources to bridge the existing gaps. No one should get sick while seeking care and no health worker should contract disease while providing care.” Yet, hundreds of millions of patients and health care workers are affected by avoidable healthcare-associated infections (HCAI) [“s (HCAI) . Such ins (HCAI) ,3.Globally, HCAI is a public health challenge affecting over 1.4 million patients, a large proportion being caused by antibiotic resistant organisms ,3. A sysHCAIs can be avoided by implementing multimodal infection prevention and control (IPC) strategies, such as (i) availing supplies to enable implementation of good IPC practices, (ii) education and training of health care workers and key players, and (iii) monitoring of practices, processes, and outcomes and providing feedback, among others ,6. DespiAchieving high IPC compliance is of critical importance in Sierra Leone. During 2014–2015, the country was one of the West African countries that experienced the worst Ebola virus disease (EVD) outbreak in history. All 14 health districts in the country were affected with over 13,000 cases and 6000 deaths . Health Recognizing the importance of IPC, the Ministry of Health and Sanitation (MOHS) of Sierra Leone established, for the first time (in 2015), a national IPC policy and guidelines for implementing IPC activities in public health facilities. The five thematic areas included hand hygiene, adequate protective wear, sharps safety, sterilization, and waste management ,10. The As Sierra Leone is an Ebola outbreak-prone country, it is vital to maintain high IPC vigilance and avoid any apathy towards a “business as usual” mode. Achieving high levels of IPC is also one of the pillars of the national action plan to tackle AMR , the logA PubMed search revealed only one study from neighboring Liberia, which showed a 64% IPC compliance one year after the 2014–2015 Ebola outbreak . There iThe specific study objectives were to assess a) average yearly compliance for the years 2016–2018 in the Kenema district hospital and PHUs in relation to scores on the National IPC assessment tool, and b) gaps in IPC activities, infrastructure, and consumables in 2018.This was a cross-sectional study using secondary IPC data collected under routine program conditions.Sierra Leone is located at the southwest coast of West Africa and shares borders with Guinea and Liberia. The country is divided into fourteen districts and four provinces, with an estimated population of about 7.7 million people, with over 40% residing in urban areas . The couKenema District was the study site located in the Eastern Province of Sierra Leone with an estimated population of 665,996 . There aThe 2014–2015 Ebola outbreak accelerated efforts to strengthen health systems in Sierra Leone, including the establishment of a MOHS-led National IPC unit. This unit was mandated to provide leadership and to coordinate and monitor the implementation and strengthening of IPC standards in all health facilities. Prior to the Ebola outbreak, no IPC activities existed in Sierra Leone, nor were there any dedicated staff for IPC at public health facilities. By November 2015, health care personnel had received training, and IPC implementation was rolled out to all public health facilities in the country. This was followed by the appointment of district IPC supervisors and an IPC focal person in each health facility. This team was charged with the responsibility of coordinating and implementing IPC activities.This study used data collected using a standardized national assessment tool known as the IPC/WASH health assessment tool developed by the national IPC unit with technical support from WHO and the US Centers for Disease Prevention and Control . This tool was developed before the launch of the infection prevention and control framework by WHO in 2018  and was The IPC/WASH checklist (2015 version) is a structured, closed-ended questionnaire with a scoring system on 10 thematic areas or components . The 10 The checklist has a total of 68 questions for hospital assessment and 64 questions for PHU assessment. For each thematic area, the total number of “yes” responses are added and divided by the total number of questions for that section. This is multiplied by 100 to obtain the percentage score. An overall score is computed for each thematic area, and based on the percentage scores, compliance is graded as (i) compliant: 85% or above (GREEN); (ii) partial compliance: 70 to 84% (AMBER) and; (iii) minimal compliance: below 70% (RED).The assessments included the Kenema district hospital and nine PHUs  selected based on convenience per quarter. The study period was January 2016 to December 2018. Field visit teams consisted of 3 to 4 people from the National IPC Unit (NIPCU) of the MOHS, District IPC Focal person(s), and supervisors supported by WHO, who visited the district on a quarterly basis and collated the data. The field teams were health professionals of different cadres  officers) with advanced training in IPC, being certified as IPC master trainers and system managers. The supervision process is such that for each quarter, the selected health facilities are visited by the same team covering at most two facilities per day. At each health facility, the team conducted a detailed assessment of the IPC status, completed the IPC checklist, and also provided on-the-job mentorship. To ensure quality, staff from WHO and US Centers for Disease Control were part of the supervision team.® spreadsheet at the National IPC unit by dedicated M&E) officers, which was used for analysis. Data validation was done by the principal investigator who took a random sample of 10% of all IPC checklists (paper-based), and these data were compared with those entered in Microsoft Excel®. Where there were errors, further elaborate cross-checking was done. However, data for this study were available for one quarter in 2016 and three quarters in 2017 and 2018.Data variables included facility type, facility name, year (and quarters), and IPC component scores, which were all part of the IPC checklist (the primary data source). This data were entered into a Microsoft ExcelData were analyzed using descriptive statistics and results expressed as frequencies and percentages. Average scores by year for each IPC thematic area were computed for the district hospital and PHUs and expressed graphically using color codes. To identify specific gaps in 2018, we listed the sub-components with zero scores in IPC activities, consumables, and infrastructure.For PHUs, we similarly calculated the proportion of facilities with zero scores for each sub-component. Any sub-component with 50% or more zero scores was considered as a significant gap area.The Tables show the average IPC/WASH compliance from 2016 to 2018 in CHCs , CHPs T, and MCHIn 2018, the minimal compliance threshold of 70% was not achieved in two thematic areas for CHC, four for CHP, and five for MCHP. For CHCs, these were screening and isolation facilities (53%) and IPC/WASH organization (69%); for CHPs, this included screening and isolation facilities (39%), waste management (63%), IPC/WASH (67%), and decontamination of linen (69%); and for MCHPs, these were screening and isolation facilities (33%), sanitation (54%), waste management (59%), and IPC/WASH and sharps safety (69% each).In 2018, the lowest compliance in all three types of PHUs was for screening and isolation facilities.All facilities had gaps in four activities, namely action plan not implemented, waste not segregated at the point of care, waste not disposed of according to appropriate color coding, and no signed record of cleaning available .For infrastructure and consumables, all facilities had gaps in three areas, including no designated laundry area, mattresses without intact waterproof covers or used with a separate mackintosh, and no appropriate bin liners in each bin .At the PHU level, out of a total of 64 questions used to identify gaps in activities, infrastructure and consumables, the maximum number of gaps were in MCHP (39) and CHC (41).This first study from Sierra Leone shows that following the introduction of a national IPC policy and implementation guidelines, average IPC compliance in health care facilities assessed in Kenema district were generally higher in 2018 compared to 2016. In 2018, the Kenema district hospital and CHCs achieved the minimal compliance of ≥70%, while this was not the case with CHPs (68%) and MCHPs (65%). In 2018, the thematic area with the lowest compliance at district hospital was sanitation, and for PHUs, this was for screening and isolation facilities. Several gaps were identified in activities, infrastructure, and consumables that will need to be bridged.The study findings are of public health importance as they are an eye-opener to what needs to be done to increase compliance levels and achieve the high expected IPC standards set by the MOHS for health facilities in Sierra Leone. With a new Ebola outbreak lurking around the corner and the ongoing COVID-19 pandemic, the imperative is “today, and not tomorrow”. Considering the added synergy between IPC and AMR prevention, in a manner of speaking, we have an opportunity to hit three birds  with one stone. Health workers, patients, and the community at large stand to benefit.The study strengths are that all assessments were conducted by the same dedicated IPC team from the central unit; a standardized checklist was used to assess the various thematic areas, data were cross-validated for quality control, and the subject matter addressed an identified national operational research priority. We also adhered to STROBE guidelines for the conduct and reporting of observational studies in epidemiology .A study limitation is that since the release of the IPCAF tool by WHO in 2018 [Despite these limitations, there are a number of important policy and practice implications. First, while the WHO (IPCAF)  tool hasSecond, in 2017 (post-Ebola), the Kenema district hospital achieved the expected IPC compliance threshold of over 85% in six of ten thematic areas. This then dropped to two areas in 2018, which might indicate some degree of complacency. However, the hospital still maintained the minimum overall compliance level of >70%, which is commendable. The MOHS-IPC reports for 2019 and 2020 show maintenance of the same level of compliance . In 2018Third, there are two weak pillars identified across all facilities and upon which all IPC activities overarch. These include (a) the lack of implementation of the IPC action plans, and (b) IPC/WASH organization. The strength of these pillars is dependent upon supervision, availability of adequate infrastructure and consumables, and understandably, and the inter-dependence between them. For example, without clean water or toilet facilities, the thematic area of sanitation suffers. Similarly, sharps safety would be compromised when close supervision and/or sharps containers are in short supply.In a resource limited country like Sierra Leone, ensuring that resources needed to assure adequate supervision, infrastructure, and consumables for the hundreds of health facilities in Kenema (and beyond) is a major undertaking that needs to be bridged. One will need to consider both immediate and medium-term measures to tackle the identified problems.Immediate measures needing urgent attention to varying levels between health facilities include the following: ensuring that soap and alcohol hand rub solutions are available at all hand hygiene stations and particularly in clinical areas; ensuring that toilets are functional and provided with a constant source of water; waste triage at source; and adequate waste disposal and sharps disposal. Sierra Leone is currently producing liquid soap and alcohol-based hand rub according to WHO standards using local materials. With the local production of these essential items, we believe the country can afford to ensure all health facilities have liquid soap and/or alcohol-based hand rub solutions. The finding that mattresses in all health facilities did not have water-proof covers needs to be corrected, as such mattresses are impossible to disinfect completely and may become a vehicle for disease transmission.medium term, there is a clear need to elaborately review the infrastructure gaps and consumable needs in Kenema district and galvanize support and funding to bridge these gaps. This study provides a good canvas for that work and would also serve for the scale up of such work country-wide. As a start, the top 10 priority gaps in infrastructure and consumables could be decided upon and tackled.In the In conclusion, this study provides a good baseline review of the IPC/WASH status in Kenema district and is an eye opener of what is working and what is not. We have identified several gaps in infrastructure and consumables, upon which effective IPC organization and implementation depend. This information will be presented to the MOHS and the One Health AMR committee, including donors in Sierra Leone with a view towards galvanizing political, financial, and material resources to bridge the gaps and act.


A cancer diagnosis during adolescence or young adulthood presents unique medical and psychosocial challenges which must be addressed in the provision of quality, comprehensive cancer care. Tailoring services to the needs of this population requires careful work to identify, monitor and evaluate areas of care; however, published work in this area to guide service priorities is limited. This paper presents work done by the Australian Youth Cancer Services to operationalise and deliver quality care to adolescents and young adults with cancer, focusing on nationally coordinated service improvement initiatives and activity data collection in four areas that are of particular concern to young people diagnosed with cancer: clinical trial enrolment, oncofertility, psychosocial care and survivorship. This account may be instructive for health services seeking to improve the delivery and monitoring of cancer care provided to adolescents and young adults. Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults. Cancer in adolescents and young adults  is relatively rare, with approximately 1200 young Australians newly diagnosed each year ,4. TheseAustralia has a dual public/private healthcare system, with all citizens and permanent residents able to access universal healthcare  through the tax-funded Medicare scheme. Private health insurance offers alternative options for treatment  and non-medical health services; however, the majority of AYAs with cancer receive specialist care through the public hospital system . This iswww.canteen.org.au).). Elements identified as key components of quality care for this population include national coordination of cancer services, increased access to support services and clinical trials, comprehensive medical and psychosocial assessment, coordinated care and multidisciplinary expertise in AYA care . Sev. Sev5]. Critically, the integrated approach of the YCS allows for coordinated national efforts regarding service improvement, professional development, networking, research and consumer engagement, as well as national collection of activity data to monitor service performance in areas identified as priorities by the NSDF and AYCF ,7. Collecting and monitoring activity data is an essential component in assessing the performance of healthcare systems and driving and evaluating the impact of service improvement initiatives ,14,15. TThe five YCS jurisdictions provide quarterly data on service provision to Canteen for national aggregation, and these aggregated annual data from 2016–17 to 2019–20 are reported and discussed here . As data presented are aggregated count data rather than individual patient data, no statistical analysis to determine the statistical significance of change over time is possible. Rather, we present the data to illustrate their utility for service monitoring and improvement.Participation in activity data collection is a requirement of the YCS contract and is overseen in each jurisdiction by a nominated staff member . These data are typically collated from existing hospital electronic records and custom processes; the precise means of doing so therefore varies between YCS jurisdictions, in line with local data collection requirements and available information systems. Indicators were chosen for their importance as key components of quality AYA cancer care, per previous research and clinical stakeholder consultation; while these do not fully capture the breadth of services provided, it was necessary to limit the number of indicators collected to those identified as priorities in order to reduce the burden of reporting for YCS staff  . ActivitThe process of service development, coordination, monitoring and ongoing improvement can be demonstrated by examining four key aspects of AYA cancer care: clinical trial participation; oncofertility care; psychosocial assessment and care; and the transition from treatment to survivorship care ,7.  increased from 67 in 2016–17 to 123 in 2019–20, representing 10-18% of new YCS patients . Notablywww.futurefertility.com.au). The risk of infertility is identified by cancer patients as one of the top unmet needs in survivorship ,38, resuFollowing a series of education and awareness initiatives and resource development in 2015–16, combined with jurisdiction-specific work to implement models of care and referral pathways, the proportion of newly diagnosed YCS patients receiving information about fertility risk and preservation options rose sharply . In the https://www.canteen.org.au/youth-cancer/resources/aya-psychosocial-care-manual/) [The intersection between AYAs’ dynamic developmental stage and the disruption associated with cancer creates unique psychosocial challenges ,64, contmanual/) ,75 and Amanual/) ). The mamanual/)  as part manual/) . A key pmanual/) ,14.Between 2016–17 and 2018–19, the proportion of newly diagnosed YCS patients completing the AYA-POST averaged 64%, peaking at 67.1% in 2016–17 but falling short of the KPI target of 75% . An indehttps://www.canteen.org.au/youth-cancer/resources/aya-oncology-psychosocial-survivorship-care-manual/) [An increasing number of AYAs are being diagnosed with cancer, completing curative treatment and moving into survivorship , with simanual/)  to paralmanual/) . DevelopOf those AYAs who completed active medical treatment in 2017–18, 61% completed a psychosocial survivorship assessment and 53% were provided with a psychosocial survivorship care plan; psychosocial survivorship assessment rates rose to 71% in 2018–19 before declining slightly in 2019–20, while rates of survivorship care plan rose and stabilised around 62% . The proQuality cancer care for AYAs is necessarily complex and multifaceted: the intersection of developmental needs with impacts of cancer and treatment creates unique challenges, which must be addressed if care is to be truly comprehensive. This paper demonstrates how the YCS facilitates Australian AYAs’ access to quality care that is comprehensive and age-appropriate—particularly around access to clinical trials, oncofertility care, psychosocial assessment and support and survivorship care. This work may be illustrative for service providers and health professionals seeking to monitor and improve care provision for AYAs with cancer using activity data. It should be noted that aggregated activity data collected primarily for monitoring purposes cannot be used to evaluate whether changes in indicators over time are statistically significant or attributable to specific service improvement initiatives, nor do they capture patients’ subjective experiences of care. However, these data are crucial in monitoring and identifying areas of service provision for further improvement: they capture how care is being provided across the entire patient population, allowing more accurate reporting of the proportion of AYAs engaged with specific aspects of care , and are collected and reviewed regularly enough to allow for timely implementation and adjustment of service improvement initiatives ,14,15. IAustralia is not entirely unique in its approach to AYA cancer care, with other countries deploying specialised AYA programs with varying degrees of cross-institutional coordination . Where c


Digital stories—first-person, self-made, 2- to 3-minute videos—generate awareness, impart knowledge, and promote understanding on topics such as mental illness. Digital stories are a narrative-based art form often created by individuals without formal training in filmmaking to relate personal experiences. Somewhat like digital narratives, video testimonies created within the social marketing or fundraising campaigns of government agencies and private or public corporations aim to reduce the stigma of mental illness while supporting research and services. In video testimonies, personal stories are captured on camera by professional filmmakers. Sharing critical life events greatly benefits tellers and listeners alike, supporting catharsis, healing, connectiveness, and citizenship.This study explores digital stories and video testimonies featuring mental illness and recovery in their ability to elicit empathy and compassion while reducing stigma among viewers.Using mixed methods, phase 1 will involve a search of Canadian social marketing activities and fundraising campaigns concerning mental illness and recovery. Phase 2 will involve the organization of digital storytelling workshops in which participants will create digital stories about their own experiences of mental illness and recovery. In phase 3, a pilot randomized controlled trial will be undertaken to compare marketing and fundraising campaigns with digital stories for their impact on viewers, whereas phase 4 will focus on knowledge dissemination.Ethics approval for this study was received in March 2021. Data on the feasibility of the study design and the results of the controlled trial will be generated. This study will produce new knowledge on effective ways of promoting mental health awareness and decreasing stigma, with practical importance for future social marketing and fundraising campaigns. The anticipated time for completion within the 2-year study period includes 9 months for phase 1  and phase 2 (storytelling workshops), 11 months for phase 3 , and 2 months for phase 4 (knowledge dissemination).The knowledge generated will have practical implications for the public and for future social marketing and fundraising campaigns promoted by government agencies as well as nonprofit and for-profit organizations by enhancing our understanding of how individuals and societies respond to stories of mental distress and what prompts citizens to help others.ClinicalTrials.gov NCT04881084; https://clinicaltrials.gov/ct2/show/NCT04881084PRR1-10.2196/33525 Stories of human distress and struggle are shared daily through news stories and in social marketing and fundraising campaigns using digital formats, including videos ,2. Digitgood media reports [Researchers have studied the portrayal of mental health issues in various media  since the 1990s -7, ident reports .Although negative, media-generated portrayals of mental distress remain a serious cultural and social concern, new internet-based media forms offer a wider variety of perspectives ,11, whetPreliminary evaluations report mixed results and raise many questions about the effectiveness of social marketing campaigns ,30. For Let’s Talk antistigma fundraising campaign, takes on the stigma of mental illness while raising funds to support research and services. Video testimonies feature stories of celebrities such as Clara Hughes, a Canadian Olympic medalist who previously struggled with mental illness. In 2020, the campaign generated >154,173,435 interactions that contributed >CAD $7,900,000  to mental health initiatives. Research showed a temporary increase in visits to mental health services among youth in Ontario, Canada, following the Let’s Talk campaign [Another successful initiative, Bell Canada’s annual campaign . Howevercampaign .Digital storytelling, that is, first-person, self-made, 2- to 3-minute narratives prepared digitally and shared on the web ,37,38, aGiven the lack of research on the impact of social marketing and fundraising campaigns ,41 and tAs Baldwin  describefeeling with another has been studied by phenomenologists contemplating how subject and object are enmeshed in prereflective existence [On the Problem of Empathy by the philosopher Edith Stein [Empathy, a key concept, has both cognitive and emotional domains. Cognitively, empathy requires an understanding of another person’s inner experiences, feelings, and perspectives regarding the outside world, whereas the affective domain involves entering the experiences and feelings of the other. The notion of xistence . Merleauxistence  describeth Stein , where scompati, means to suffer with. Compassion, described as the capacity to feel distress for, and desire to alleviate the distress of, another person cuts across theological, philosophical, and psychological traditions [Compassion, from the Latin aditions . The Daladitions ,47, wheraditions -49. The aditions ,49, inspaditions , developThis study explores digital stories and video testimonies about mental illness, particularly those focused on mental health recovery, and how these stories elicit empathy and compassion. The following three questions will be addressed:How are mental and emotional distress depicted in video testimonies presented in social marketing and fundraising campaigns versus digital stories made by people without formal training in filmmaking?What impact does digital storytelling have on its creators, as people willing to revisit difficult life moments and transform them into digital videos?How do digital narratives  elicit empathy and compassion among viewers?Qualitative research methodology will be used to investigate all study activities related to digital storytelling, based on the following three research questions:What is the value of digital narratives  and digital stories created by individuals for retheorizing empathy and compassion?How do digital narratives  influence empathy and compassion? What emotions emerge when people engage with these digital narratives as viewers?How do digital stories created by ordinary people impact empathy and compassion? What emotions emerge when people engage with digital stories as viewers?A pilot randomized controlled trial (RCT) will be performed as a feasibility study to assess the impact of video testimonies  versus digital stories.The specific quantitative research question is as follows: are digital stories made by people without formal training in filmmaking more effective in eliciting empathy and compassion among viewers than the digital narratives used in social marketing and fundraising campaigns?Using the Thabane et al  typologyProcess: what were recruitment rates and refusal rates for participation; how was randomization conducted?Resources: how much time was required to conduct each stage of the protocol? How much time was required to recruit participants (university students)? How adequate was the web-based platform  for collecting data?Management: what was the research team’s capacity, expertise, and availability for completing the planned research activities? Were any important study variables omitted? Do the data show too much or too little variability?Scientific basis: what were the reliability, validity, and trustworthiness of assessments used with the targeted population (university students) for this specific intervention? What was the estimated intervention effect? What was the estimated variance of the intervention effect?The primary focus of this pilot study will be to gather data on the feasibility of the RCT; however, the following primary and secondary hypotheses have been generated .Primary hypothesesChange in empathy among participants using the Toronto Empathy Questionnaire Change in compassion among participants using the Compassionate Love Scale Secondary hypothesesChange in positive emotions among participants using the Dispositional Positive Emotions Scale Change in mental health self-stigma among participants using the Self-Stigma of Mental Illness Scale-Short Form Change in public mental health stigma among participants using the Difference and Disdain Scales for Public Stigma This is a multiphase, mixed methods project that uses both qualitative and quantitative methodologies . QualitaCanadian public and social marketing campaigns that include video testimonies on mental illness, mental or emotional distress, and recovery were identified using a web-based search engine (Google). The websites of organizations dedicated to improving mental health and well-being  were identified and searched for campaign materials. All video testimonies identified from these campaigns and organizational websites were collected and will be analyzed. The search was supplemented by a Google video search to locate other publicly disseminated video testimonies. The searches were conducted from April to September 2021 to capture the most visible Canadian campaigns at the start of the study. Videos selected from each identified campaign included all the available first-person video testimonies, 1 to 5 minutes in duration, as well as television commercials and video advertisements in English and French. Campaign materials created as fact sheets involving substantial written text or image-based materials  were excluded. This study aims to gather 10 to 30 video testimonies for evaluation (phase 3).Phase 2: Digital Storytelling Workshops section). Discourse analysis appears to be an essential component in phases 1 and 2, which, in this phase, focuses on unpacking the meaning of texts, language, and other forms of communication in their social context [The authors MF and SF will use visual discourse analysis ,57 to as context . Using t context . In visu context -62, form context . Moreove context . The 3 p context . The com context .Following visual discourse analysis of the video testimonies  and digital stories, we will select the most suitable visual material for the RCT. A total of 2 homogeneous participant groups will be created to view the video testimonies and digital stories, respectively. The 2 groups will be similar in relation to illness experiences  and language (English or French). The 3 dimensions for examining visual content  by Leeuwen  will be MF will organize and facilitate the workshops. MF has previously implemented and evaluated a knowledge mobilization project using digital stories to explore care-seeking and access to care for psychosis. She will train 3 graduate students on digital storytelling practices. Workshop participants (aged 18-35 years) will be asked to create short, digital videos describing their subjective experiences of recovery from mental illness.Social and community mental health services in Montreal and local universities will be contacted to promote, and host, 3-day digital storytelling workshops designed to produce a wide range of stories about recovery from mental illness that elicit emotions such as hope and compassion. Invitations to participate in the workshops will be posted . Maximum variation sampling ,64 will storytellers) will be invited to reflect on and depict moments involving emotions such as fear, shame, doubt, hope, courage, empathy, and warmth. Short digital videos created during each workshop will also be used for the evaluation of the study. The stories produced will remain the property of participants, who will each receive a media release form at the end of their workshop specifying if, how, and when their digital stories may be used. For this reason, we are soliciting the creation of approximately 60 digital stories for later use in the RCT. Workshop participants will be invited to a short interview before the workshop, and a longer interview soon afterward, to explore their experiences and story-sharing processes.Workshop participants  using a secure, approved platform (Microsoft Teams). In addition, the web-based workshops will not operate under the full 3-day format, as originally planned, but will be split into short internet-based meetings, 3 hours each, and conducted over a 5-day period.ethical practices in digital storytelling [This project embraces ytelling . The priAll workshop participants will participate in brief pre- and postworkshop interviews (n=60). Data will be analyzed thematically using a data-driven (inductive) approach rather than a theory-driven (deductive) approach. In this phase, the thematic analysis offers a useful method for examining the similarities and differences in the views of the research participants, generating rich insights. On the basis of a well-structured approach to handling data, thematic analysis is useful for producing clear, well-defined themes, subthemes, and relationships between them ,66. FollA parallel 2-arm RCT design will be used to assess the impact of digital stories made by ordinary people compared with digital narratives used in social marketing and fundraising campaigns. A convenience sample of university students  from McGill University will be invited to participate in the pilot RCT, as a population comfortable with accessing web-based visual content and relatively easy to engage within the project timeline.The project coordinator will assess participant eligibility, obtain consent, and facilitate data collection . Participants will choose an option for the screening and consent processes, whether in person, by phone, or video call using a secure platform (Microsoft Teams). Before seeking consent, the project coordinator will explain the consent form to RCT participants, informing them of the study objective, potential risks and benefits of participation, expected study duration, data collection processes, and methods and procedures for maintaining data confidentiality. Participants will be invited to ask questions before signing the consent form. Written informed consent will be obtained from all participants.Participants will be randomly assigned (1:1 ratio) to the social marketing or fundraising group  or the digital storytelling group  using the SAS, Stata, or R software. One of the arms of the pilot RCT will expose the participants to digital storytelling videos (intervention group), whereas the second arm will expose the participants to social marketing and fundraising videos (active control group). For both arms, sensitive content will be discussed with participants before screening of the videos so that certain content may be skipped over as needed.The inclusion criteria for the study are as follows:Individuals of 18-35 years of ageIndividuals not currently treated in a hospital inpatientThe exclusion criteria for the study are as follows:Individuals outside the age range (18-35 years)Individuals currently treated in a hospital inpatientIndividuals who attended a digital storytelling workshop and made a digital story used in the RCTParticipants will complete the first set of measures (time 1) before exposure to either study condition. Digital narratives will be assessed using a between-subjects design, in which each participant will view only video testimonies  or only the digital storytelling videos . The system will record this information. Participants in each group will be exposed to a maximum of 10 video testimonies or digital stories. They will also complete standardized scales and a series of multiple-choice and open-ended questions regarding their perceptions of each digital video testimony or digital story. The duration of the survey will be 15 to 20 minutes.Using a secure platform, a web-based survey comprising a variety of standardized scales, multiple-choice questions, and open-ended questions will be developed to assess video testimonies from social marketing or fundraising campaigns versus digital stories for their impact on empathy and compassion. The following scales will be used: Level of Familiarity scale (11-item questionnaire), which assesses the degree of contact with people living with specific diagnoses and will be used only before exposure to movies ; TorontoWhy do you think this video was made? How much control did the person in the video have over the story?How much control did the person in the video have over production of the video ?How much control did the person in the video have over editing?How much control did the person in the video have over its dissemination or use?How much did watching these videos affect you?What was the most important thing you learned?Mean group differences in scores on the selected measures from baseline to postintervention will be analyzed using repeated-measures analysis of variance, with intervention as the between-subjects factor and time the within-subjects factor, and with an interaction term (time and interaction group). To address feasibility questions, we will use descriptive statistics from standard operating procedures  and data collected .The knowledge dissemination plan will use targeted strategies and tools to make findings readily accessible. Identified knowledge users include academics from multiple disciplines, government policy makers, organizational decision-makers, and the public. Findings will reach the academic community through presentations at international conferences and publications in peer-reviewed journals. Web platforms will be used to reach government policy makers, nonprofit or for-profit organizations, and other stakeholders, favoring content in the form of brief reports (French and English) and infographics. With participant consent, digital stories will be submitted for release at future public events, including short film festivals, to promote ongoing public dialog.Distinctive data collection activities will be implemented and a systematic search performed to identify social marketing and fundraising campaigns (video testimonies) and analyzed using visual discourse analysis. Digital storyteller workshops will be implemented to generate digital stories that will be analyzed using visual discourse analysis. Interviews will be conducted with workshop participants to further investigate their experiences, and interviews will be analyzed using thematic analysis. At the end of each activity , the research team will hold a debriefing session on the research process, which will also increase credibility. Transferability, which refers to the generalizability of the qualitative inquiry and findings, will be operationalized through a detailed description of the methodological steps taken and an explanation of the process by which the definitive findings were generated and interpreted. To achieve dependability, the research team will document each phase so that the activities and decisions taken are transparent [This study uses Lincoln and Guba  concept nsparent ,72. A lonsparent , confirmTo promote the validity and reliability of the RCT, this project has been registered, and CONSORT  will be used to report the methodology and outcomes of the pilot trial.The study was approved by the research ethics board of the Douglas Hospital Research Centre, Montreal, Canada, in March 2021. The study design adheres to the CONSORT guidelines for reporting pilot RCTs ,75. Antiordinary people, (2) implement a digital storytelling workshop in the community and create a collection of digital stories that capture emotional encounters involving compassion , (3) assess the impact of social marketing or fundraising campaigns and digital stories created by ordinary people for viewer empathy and compassion, (4) explore the subjective experience of creating a personal story about mental and emotional distress in relation to theoretical formulations of empathy and compassion, and (5) explore the subjective experience of viewing digital stories about mental and emotional distress and compare this experience with the theoretical formulation of empathy and compassion.The short- and long-term objectives of the project are to (1) analyze how mental and emotional distress is depicted in social marketing or fundraising campaigns versus digital stories created by Portrayals of mental distress are a matter of cultural and social interest as new media products become available to the public. Studies published since the 1990s overwhelmingly conclude that formal media depictions are biased, promoting the stereotypical view of people who undergo distress emotionally as mentally ill, dangerous, violent, or insane. Various agencies, organizations, and corporations are actively working to provide alternative stories or narratives to those presented in mainstream media by using video testimonies in social marketing and fundraising campaigns and, ultimately, by taking advantage of the internet. The impact of this work is underresearched. However, preliminary evaluations of social marketing campaigns report mixed results and raise questions about their effectiveness. In addition, the first-person narrative, prepared digitally and shared on the web, provides an alternative to mainstream media stories.People are increasingly using digital videos to share their stories, viewing this as an opportunity to understand their emotions and thoughts and come to terms with disgrace around sensitive personal issues and marginalization while providing hope and encouragement to others. The proposed study explores digital stories, particularly stories of mental illness and recovery, and their ability to elicit empathy, compassion, and sense of citizenship among viewers.This mixed methods study is the first to examine digital stories and video testimonies featuring mental illness and recovery in their ability to elicit empathy and compassion among viewers while reducing stigma.The study will produce important knowledge on effective ways of promoting mental health awareness and decreasing stigma in the public, with practical application for future social marketing and fundraising campaigns.Generalizability of the findings is limited to the Canadian and North American context, as the digital stories and video testimonies selected and evaluated in this study represent social marketing and fundraising campaigns in Canada or the testimonies of private citizens.People are increasingly using digital videos to share their stories, viewing this as an opportunity to understand their emotions and thoughts and come to terms with disgrace around sensitive personal issues and marginalization while providing hope and encouragement to others. The proposed study will explore digital narratives, particularly those dealing with mental illness and recovery, and their ability to elicit empathy, compassion, and a sense of citizenship among viewers. The knowledge generated will have practical implications for the public and for future social marketing and fundraising campaigns promoted by government agencies as well as nonprofit and for-profit organizations by enhancing our understanding of how individuals and societies respond to stories of mental distress and what prompts citizens to help others.


Though current evidence suggests that racial–ethnic inequities in dental caries persist over time and across space, their magnitude is currently unknown from a global perspective. This systematic review aims to quantify the magnitude of racial/ethnic inequities in dental caries and to deconstruct the different taxonomies/concepts/methods used for racial/ethnic categorization across different populations/nations. This review has been registered in PROSPERO; CRD42021282771. An electronic search of all relevant databases will be conducted until December 2021 for both published and unpublished literature. Studies will be eligible if they include data on the prevalence or severity of dental caries assessed by the decayed, missing, filled teeth index (DMFT), according to indicators of race-ethnicity. A narrative synthesis of included studies and a random-effects meta-analysis will be conducted. Forest plots will be constructed to assess the difference in effect size for the occurrence of dental caries. Study quality will be determined via the Newcastle–Ottawa Scale and the GRADE approach will be used for assessing the quality of evidence. This systematic review will enhance knowledge of the magnitude of racial/ethnic inequities in dental caries globally by providing important benchmark data on which to base interventions to mitigate the problem and to visualize the effects of racism on oral health. Over the last four decades, there have been heated debates about the drivers of general and oral health inequities ,2,3. TheEvery country has a different way of categorizing ethnic, racial, and cultural groups, with no global standard definition ,7. Oral Racial–ethnic health inequities refer to unfair differences in the health outcomes between groups based on race, ethnicity, or any other markers of ancestral or cultural heritage . SeveralTo the best of our knowledge, no systematic review has estimated the disproportionally higher burden of dental caries among racially marginalized groups globally. Current reviews have restricted their search strategy to Indigenous populations ,22,23,24To quantify the magnitude of inequities in dental caries prevalence and severity (O) among racial–ethnic (E) groups (P) when compared to the non-minority (C) in observational studies (S). What concepts and methods are used by researchers to address race, ethnicity, or combination of both for a group of the population? Are the concepts of race and ethnicity treated differently by the authors?The research question has been defined according to the PECOS format; population (P), exposure (E), comparator (C), outcomes (O), study design (S):This systematic review and meta-analysis will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocol (PRISMA-P) guidelines  Supplem. This reFor this review, we aim to estimate dental caries prevalence and severity among both racially marginalized and hegemonic groups within a country. Participants of all ages, including children and adults of all genders, will be eligible for inclusion. The review will not be restricted to any geographic location.Exposure is defined as members of an ethnically or racially minoritized group in a given country. The racial–ethnic definitions or classification systems vary across countries and populations, meaning that a single global definition is challenging. We intend to identify the different taxonomic classifications used in dental caries literature for racial/ethnic categories  or identify other concepts used for classification of groups .The DMFT index is the predominant population-based measure of dental caries experience worldwide , providiAdditionally, we would classify the different methods and concepts used for identifying racial/ethnic groups and we would identify if the authors differentiated between these two terminologies. The presence of one or more of the following criteria will identify the failure to distinguish between both categories: (1) use of compound terms racial/ethnic or race/ethnicity; (2) use of terms “race” and “ethnicity” interchangeably; and (3) comparison of race and ethnic groups .An electronic search will be conducted of the relevant databases from their inception until December 2021. Cross-sectional studies, case–control studies, and cohort studies assessing the association between race and our primary outcomes will be included. Studies will not be excluded based on population sampling techniques . Baseline data from experimental studies, such as randomized controlled trials and quasi-experimental studies, will be included if they address the research question and refer to a point in time before the intervention carried out in the original study.Studies will be included according to the following criteria: (1) original research/secondary data focused on reporting the prevalence and/or severity of dental caries based on the WHO criteria of DMFT; (2) comparative studies having data on both racial/ethnic groups and nationally representative population; (3) data collected through dental examinations and clinical recording of either dental caries prevalence and/or the number of decayed, missing and filled teeth.If more than one study used the same secondary dataset  and analyzed the same population more than once, the most recent analysis will be included. Studies that have a larger sample size and/or assess the sample over a longer period will be included over smaller studies in case they include the same population.The exclusion criteria will be (1) studies that do not assess caries prevalence or severity; (2) absence of comparative majority population; (3) studies that use indices or assessment scores other than the DMFT ; (4) papers that define race based on immigration status; (5) studies that rely on self-reported clinical data or which lack clinical oral examinations for caries assessment; and (6) publications that refer to case reports/case series, conference abstracts, animal studies, in vitro studies, literature reviews, qualitative studies, letters, commentaries, opinion pieces, and editorials.The language will not be a restriction for study inclusion. For articles published in languages other than English, a direct translation will be carried out. In case this is not possible, online translating tools will be used, such as Google Translate and FineReader (ABBYY FineReader PDF 15 for Windows).The review will consider studies that are original, and performed in community settings, homes, mobile dental centers, schools, or dental hospitals. Any study that used data from national oral health surveys, government registries, or census will be included.An initial electronic search was conducted in MEDLINE/PubMed to identify all potentially relevant articles on racial/ethnic inequities in dental caries from the inception of the platform until 31 December 2021. With the pilot search, all the relevant terms  were identified and the main search strategy was formed . This wiA systematic approach to source grey literature will be developed to identify all the relevant reports, by using Open Grey and ProQuest. Review authors will conduct an online web search using a combination of keywords, such as racial minority, ethnic group, Indigenous, and dental caries for the grey literature. Government reports, national oral health surveys, government registries that have comparative data on dental caries between race- or ethnicity-based groups will be considered for inclusion. All potentially eligible websites will be screened by two reviewers independently. Furthermore, expert authors in the field will be contacted via email for additional unpublished data or any other possible relevant studies.Studies retrieved from database searches will be uploaded to EndNote X9 . The final list of articles will be transported to Covidence, an online software platform, to assist with file management . Two resA customized data extraction form will be prepared, pilot-tested, and modified accordingly . Data exArticle information: Last name of the first author, year of publication, journal, and country or region of analysis;Study characteristics: Area and location of the study, sample size calculation (yes/no), study design, and sampling methods; details of the secondary dataset used (if relevant);Participant characteristics: Description of case population and control population, number of participants in each group, and mean age of participants;Defining ethnic/racial group: concept used to define a group , methods used for assessing race and ethnicity , differentiation of both groups (yes/no), classification based on the taxonomies, any other variables used along with race and ethnicity, whether the authors differentiate race and ethnicity and whether they recognize the limitation of the classification, and stated purpose of use ;Dental caries measurement: Prevalence (%) of dental caries, mean DMFT/dmft, mean number of decayed teeth, missing teeth and filled teeth;Outcome: The results of selected study.The data extraction form will include:If the values are given in 95% confidence interval (CI), a formula recommended in the Cochrane Handbook, would be used for conversion to SD . If 95% Quality assessment of included studies will be performed using the Newcastle–Ottawa Scale . The scaThe quality of evidence across the included studies will be assessed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology . No studThe results will be synthesized both narratively and quantitatively. A descriptive review of all included studies will be incorporated in a table of study characteristics. The data will be summarized on the different concepts/methods used for classifying race/ethnic groups.For quantitative synthesis, meta-analysis will be conducted for mean DMFT scores, and dental caries prevalence based on each racial/ethnic category. A random-effects model using the restricted maximum likelihood (REML) method will be used in Stata statistical software  for meta-analysis. Forest plots will be constructed, and the effect size computed using Hedges’s g standardized mean and its corresponding 95% confidence interval (CI) . The mag2 statistics would be inspected for heterogeneity. The I2 index will be interpreted as low, moderate, or high inconsistency if the values are equal to 25%, 50%, and 75%, respectively [Forest plots and Iectively .Galbraith plots  .Leave one out meta-analysis that calculates the effect size multiple times by omitting one study at a time.Depending on the total number of studies, subgroup analysis may be conducted based on age, geographic location, study design, year of publication and quality assessment score.Heterogeneity will be assessed using several methods as listed below:Publication bias will be identified using Egger’s test and funnel plot asymmetry . An asymThis review aims to quantify the magnitude of racial–ethnic inequities in dental caries at a global level. Dental caries cause destruction of the dental hard tissue (enamel and dentin) as a result of acids produced from the microbial fermentation of free sugar. The global prevalence of dental caries ranks first among all diseases  and 2.5 Different classification systems can have a direct impact on clinical interpretation, diagnosis, and outcome, and lead to either under- or over-estimation of the dental caries inequities among a population. Every ethnic and racial classification system contains inaccuracies and is therefore inadequate to capture the full ethnic and racial diversity of a given population . Many ofThe concept of inequity as used in the World Health Organization (WHO) refers to differences in health that are avoidable and unnecessary and considered unfair and unjust . TherefoRacial and ethnic minoritized groups are disproportionately represented among the socially disadvantaged. Indeed, racial and ethnic inequities are often used as a proxy for the impact of social processes of racialization and experiences of racism . These iQuantifying dental caries inequities among racial–ethnic groups is the first step in planning and developing interventions targeted towards these populations. Culturally sensitive approaches are required to both improve population oral health overall, as well as to reduce oral health inequities. This review will also help us understand the current concepts of race and ethnicity being used in the cariology literature. As a dental research community, we should understand the ways of classifying race and ethnicity, and consider the ways we analyze and report the measures to understand the true impact.


Despite the well-understood benefits of biomarker and genetic testing in precision medicine, uptake remains low, particularly for patients with low socioeconomic status and minority ethnic backgrounds. Patients report having limited familiarity with testing terminology and may not be able to accurately explain testing's role in treatment decisions. Patient confusion and lack of understanding is exacerbated by a multiplicity of overlapping terms used in communicating about testing. A LUNGevity Foundation–led working group composed of five professional societies, 23 patient advocacy groups, and 19 industry members assessed and recommended specific terms for communicating with patients on testing for tumor characteristics and germline mutations.Members completed a precision oncology testing framework analysis  for nine solid tumors and blood cancers. The evaluation was segmented into terms that distinguish between somatic and germline testing. Additional data were captured in a comprehensive survey  led by FORCE (Facing Our Risk of Cancer Empowered) on patient preferences on germline testing terms.Thirty-three terms were noted in patient education related to biomarker, genetic, and genomic testing. Biomarker testing was selected as the preferred term for testing for somatic (acquired) alterations and other biomarkers. Genetic testing for an inherited mutation and genetic testing for inherited cancer risk were selected as the preferred terms for testing for germline variants.Democratizing comprehension about precision oncology testing through intentional use of plain language and common umbrella terminology by oncology health care providers and others in the oncology ecosystem may help improve understanding and communication, and facilitate shared decision making about the role of appropriate testing in treatment decisions and other aspects of oncology care. Precision medicine has transformed the practice of oncology, offering opportunities for significantly improved outcomes in an array of solid and hematologic malignancies. Indeed, professional guidelines routinely recommend the application of genomic and laboratory techniques in oncology to both direct treatment and elucidate inherited cancer risks.Key ObjectiveAdvanced diagnostic cancer risk and oncology testing that informs personalized treatment decisions for patients has been challenging to communicate effectively because of medical jargon and overlapping terminology. For the first time, a multistakeholder pan-cancer working group analyzed the landscape of precision-medicine terminology and provided recommendations for plain language terms that providers and other stakeholders can use to address gaps in patient health literacy and improve shared decision making.Knowledge GeneratedRecommended consensus umbrella testing terms for patient communication were biomarker testing (for acquired tumor characteristics) and genetic testing for an inherited mutation and genetic testing for inherited cancer risk (for germline testing).RelevanceA recently updated CDC definition of health literacy incorporates the role of organizations in making health information equitably accessible and understandable to patients. When used consistently, common cancer testing terminology can address poor patient comprehension of the role of testing in accurate treatment selection.EGFR and/or ALK.1 A more recent study evaluating testing rates showed that only 7% of patients receiving care in community oncology settings received the recommended testing for all seven biomarkers specified in the active clinical guidelines.2 Likewise, in patients with gastrointestinal stromal tumor, recent data indicate that fewer than 27% received recommended tumor testing for KIT mutations,3 and only 40% of patients with colorectal cancer received recommended testing for known actionable mutations.4 Testing according to current guidelines remains below 50% for most populations recommended for inherited cancer risk testing. This includes subgroups of patients with breast cancer, and patients with ovarian, pancreatic, and metastatic prostate cancer.5However, many eligible patients are not benefiting from advances in precision medicine because of low rates in both biomarker testing for tumor-specific therapies and genetic testing for inherited mutations that indicate increased cancer risk. In lung cancer, for example, a study of 5,688 patients with non–small-cell lung cancer from 2011 to 2016 demonstrated that 15.4% received broad-based genomic sequencing and 84.6% received single gene testing for 6 Studies suggest that demographic factors such as language, age, and insurance status may contribute to decreased access to germline genetic testing in prostate cancer.7 In colorectal cancer, study findings suggest that socioeconomic status, insurance status, and hospital care settings could also play a role in access to biomarker testing.8 Recent studies have shown lower biomarker testing rates in patients with cancer from underserved communities.10 For example, a recent retrospective observational study of patients with non–small-cell lung cancer using the Flatiron Health database showed a more than 10 percentage point difference in White (50.1%) patients receiving biomarker testing with next-generation sequencing compared with Black patients (39.8%).11 Inequitable access to testing and treatment is also exacerbated by inadequate inclusion of diverse ethnicities in the diagnostic test reference cohorts compared with populations of these patients receiving testing in the clinic. One study showed that the proportion of American Indian or Alaskan Native and Native Hawaiian or Other Pacific Islander in a pan-cancer institutional cohort receiving NGS testing was significantly lower than that of patients of European ancestry.10There are multiple likely reasons for this pervasive undertesting, including limited availability of adequate samples, lack of provider knowledge or support (including testing and counseling resources), geographic factors, racial disparities, socioeconomic factors, limited insurance coverage, and reimbursement challenges.Managing these complex challenges will require long-term policy, process, and infrastructure solutions, but there are also more immediate opportunities at hand to address a key driver of suboptimal testing rates: confusion and lack of understanding among patients and caregivers about the language used in precision medicine. Recent preliminary results (manuscript in preparation) from Cancer Support Community, a pan-cancer patient advocacy organization, found wide variability of familiarity of terms used in patient education about precision medicine. The research surveyed 30 patients and caregivers (21 women and nine men) with education levels ranging from high school to post-graduate school who have experience with malignancies such as breast cancer (eight), prostate cancer (six), lung cancer (three), and other cancers (13). Almost two thirds of patients with cancer and caregivers reported never having heard of or not knowing anything about the terms precision medicine (61%) and cancer subtype (66%). When asked about biomarker testing, which can also be called molecular testing, tumor profiling, somatic testing, or genomic testing of cancer cells, most patients and caregivers reported being familiar with the term and were able to articulate an accurate definition. However, although 73% indicated a basic understanding of targeted therapy, most respondents were unable to provide an accurate definition. Most respondents (90%) reported they understood the term genetic testing for inherited cancer risk and were able to articulate an accurate meaning  by the patient advocacy group LUNGevity Foundation that surveyed patients with lung cancer about recognition of precision medicine terms found that awareness of the term targeted therapy has penetrated the patient population. When patients with lung cancer were asked whether they had heard the terms biomarker testing, mutation testing, genetic testing, genomic testing, tumor profiling, and molecular testing, 88% of patients responded that they had heard of at least one testing term. The somatic mutation testing term that had the highest level of familiarity to patients with lung cancer was biomarker testing, with 92% of patients in the LUNGevity network and 65% of patients who are unaffiliated with a patient advocacy group citing familiarity.12 When asked, patients often cite difficulty sorting out complex information about what tests to have, what tests they may have had, how results can guide treatment and care decisions, and how test results may apply to patients accessing clinical trials. In a survey of 648 patients with breast cancer from diverse communities conducted by patient advocacy groups Facing Our Risk of Cancer Empowered (FORCE) and Living Beyond Breast Cancer, respondents seemed to understand germline genetic testing the most, and tumor biomarker testing for acquired alterations the least. Almost half of the respondents (46%) reported that they did not understand their tumor biomarker test results. In addition, some respondents expressed confusion about the difference between genetic testing for inherited mutations (pathogenic variants) and tumor testing for acquired mutations only found in the tumor.13Patient-reported confusion about biomarker testing is likely driven, in part, by the lack of consistency and multitude of different terms used by providers, other experts, and commercial companies when discussing testing.Although precision medicine and testing can be complicated subjects for a lay audience, it is important that the medical community and others communicating with patients strive for language that is both accurate and accessible so that our patients can be active partners in managing their care and engaging in shared decision making about their best care options.To assess the extent of patient and caregiver confusion about testing terminology and propose potential remedies, over the last year, LUNGevity Foundation has convened a multistakeholder pan-cancer working group of patient advocacy organizations, professional societies, medical product developers, and laboratories.14 These terms were evaluated by working group members, which included patient advocacy organizations with expertise in precision medicine for their disease space, professional societies such as the Association for Molecular Pathology, the Association of Community Cancer Centers, and the National Society of Genetic Counselors, and industry represented by pharma and biotech, laboratories, and test manufacturers. In addition, for the selection of the germline testing term, terms were refined based on feedback received through surveys of more than 1,700 patients and caregivers. Although working group members did not perform an additional patient survey for the selection of a term for testing for acquired somatic and nongenomic biomarkers, a subset of member organizations had previously queried their patient communities about terms under consideration, and these insights were integrated into the discussion and selection of a preferred term.After documenting more than 33 different terms related to biomarker, genetic, and genomic testing that are currently in use within oncology clinical care and patient education, the working group sought consensus among the stakeholders on several proposed preferred terms that could be applicable across tumor types.biomarker testing.For tests that identify characteristics, targetable findings, or other test results originating from malignant tissue or blood, the recommended umbrella term is genetic testing for an inherited mutation and genetic testing for inherited cancer risk, which would be used in the appropriate specific clinical scenario.For tests that identify germline mutations or variants, the recommendation is for The result of this effort was the recommendation that all stakeholders in the oncology ecosystem adopt common, consistent terms for biomarker and germline genetic testing for all cancer types. Specifically, the working group proposed the following:15 are designed to be cross-cutting umbrella terms that can be used in all care settings, with the recognition that there will be important nuances relating to individual patients' specific disease states and family histories. It is expected that providers and others who communicate with patients will augment the baseline terms with necessary additional explanations, to ensure that patients receive accurate and appropriate information about their diagnosis, prognosis, and care options. It should be noted that providers who practice in diverse cross-cultural and multiracial communities where English is not the first language may benefit from additional adaptation of these terms for optimal provider-patient communication. Guiding principles for cultural adaptation include a four-step process: (1) forward translation; (2) expert panel review of the translated terms; (3) back-translation, and (4) testing the terms with the intended audience in interviews and focus groups.16These recommendations, which are detailed in a recently released White Paper,Adopting a consistent set of clear, plain-language terms as the starting point for improved patient and provider communication and understanding is a critical step in maximizing the potential benefit of novel therapeutic approaches for our patients. We applaud and support the working group's commitment to this goal and encourage our oncology provider colleagues to join us in adopting these recommendations.


The effect of RPMI > 1 time/day was equivalent to the effect of having 42 percentiles higher PRS level . RPMI increases CRC risk regardless of PRS levels. Avoiding RPMI can compensate for a substantial proportion of polygenic risk for CRC.High red and processed meat intake (RPMI) is an established risk factor for colorectal cancer (CRC). We aimed to assess the impact of RPMI on CRC risk according to and in comparison with genetically determined risk, which was quantified by a polygenic risk score (PRS). RPMI and potential confounders (ascertained by questionnaire) and a PRS (based on 140 CRC-related loci) were obtained from 5109 CRC cases and 4134 controls in a population-based case–control study. Associations of RPMI with CRC risk across PRS levels were assessed using logistic regression models and compared to effect estimates of PRS using “genetic risk equivalent” (GRE), a novel metric for effective risk communication. RPMI multiple times/week, 1 time/day, and >1 time/day was associated with 19% (95% CI 1% to 41%), 41% (18% to 70%), and 73% (30% to 132%) increased CRC risk, respectively, when compared to RPMI ≤ 1 time/week. Associations were independent of PRS levels (p Colorectal cancer (CRC) is a heterogeneous disease resulting from a complex interplay between environmental and genetic risk factors. In 2015, the International Agency for Research on Cancer rated processed meat as carcinogenic to humans (Group 1) and red meat as a probable carcinogen to humans (Group 2A) [So far, genome-wide association studies have identified more than 100 common genetic variants associated with CRC risk ,3,4,5. AIn this large population-based study from Germany, we aimed to assess the association of red and processed meat intake with CRC risk across various levels of a PRS that incorporates information from 140 independent genetic variants on CRC risk ,12, a reData were extracted from the DACHS (Darmkrebs: Chancen der Verhütung durch Screening (German); Colorectal Cancer: Chances for Prevention Through Screening (English)) Study, an ongoing large population-based case–control study of the German Cancer Research Center in Heidelberg, Germany. Details of the DACHS study have been reported elsewhere ,14. BrieThe DACHS study was approved by the ethics committee of the Heidelberg Medical Faculty of Heidelberg University and the state medical boards of Baden-Wuerttemberg and Rhineland-Palatinate. Written informed consent was obtained from each participant.Information regarding sociodemographic, medical, and lifestyle histories was collected by trained interviewers using a standardized questionnaire. Interviews were usually scheduled in hospital for cases and at home for controls. Additionally, discharge letters and pathology reports were collected for all cases. Buccal swabs and blood samples were taken for both cases and controls. A minority of control participants that opted out of the interview provided some key information in a short self-administered questionnaire and were excluded from this analysis, since detailed dietary and genetic data were not collected from these participants.Dietary information was obtained using a 23-item food frequency questionnaire at baseline. Participants were asked about their average frequency of consumption over the previous 12 months before the date of the interview (controls) or the date of the diagnosis (cases). There were six possible responses for each item: never; less than once per week; once per week; multiple times per week; once per day; multiple times per day. As outlined in DNA was extracted from blood samples (in 99.1% of participants) or from buccal cells (in 0.9% of participants). Information about genotyping and imputation of missing genotypes is provided in 2), smoking (never/former/current smokers), alcohol consumption , historTo investigate the variations of ORs of meat intake across PRS levels, we conducted association analyses by PRS categories in addition to analyses in the entire study population . We tested the interaction of red and processed meat intake with PRS  by adding pertinent cross-product terms into the models. Furthermore, joint effects of PRS and meat intake were assessed using participants who were at a medium level of PRS and consumed red and processed meat ≤1 time/week as the uniform reference group.Site- and stage-specific association analyses were conducted for the subsites of the colon including proximal colon (cecum to left flexure) and distal colon and rectum, and for stages I–III and stage IV. We furthermore conducted stratified analyses of the association of red and processed meat intake with CRC risk by age (≤55/>55), sex , family history of CRC (yes/no), and history of colonoscopy (yes/no), and we tested for potential interaction by these factors by including product terms between red and processed meat consumption and these covariates in the regression models.Finally, GREs for red and processed meat categories were calculated as ratios of the regression coefficients for red and processed meat intake and PRS percentiles from logistic regression models using an approach in analogy with the previously developed and well-established concept of risk and rate advancement periods . A descrAll analyses were performed using R software version 4.1.1. Statistical tests were two-sided with an alpha level of 0.05.After excluding participants with missing information of red and processed meat intake (15 cases and 14 controls), 5109 patients with CRC and 4134 controls were included in this study . The disp value = 0.97 and 0.79 in models with PRS included as a continuous or categorical variable, respectively).Results of the joint association of red and processed meat intake and the PRS with CRC risk are presented in Estimates of GRE for different red and processed meat intake categories are presented in Results for the stratified analyses are summarized in In this large population-based study case–control study, we found that red and processed meat intake was strongly and independently associated with CRC risk, resulting in a very strong risk gradient between those at very high PRS and high consumption of red and processed meat, and those with a very low PRS and low consumption. The effect estimate of red and processed meat consumption in the highest category versus the lowest category was equivalent to that of having a level of PRS 42 percentiles higher, suggesting that abstaining from consuming high levels of red and processed meat might compensate for a large share of genetically increased risk.Our results are consistent with the accumulated evidence that has linked higher intake of red and processed meat to increased CRC risk ,21,22,23Several substances in red and processed meat have been suggested to have carcinogenic effects, such as preservatives , some nutrients enriched in meats , and certain chemicals present during meat processing and cooking  ,25,26,27Gene–environment interaction studies might help to better understand and more fully disclose the role of red meat and processed meat intake in CRC risk. No significant interactions with single CRC-related genetic risk variants were found after correction for multiple testing in previous studies ,7, possiBoth the study by Yang et al. and our study evaluated interactions on the multiplicative scale that can be directly estimated from logistic regression models. Although no such interactions were detected, it should be noted that the same relative risk of meat intake across PRS levels implies a higher increase in absolute risk of most frequent meat intake among people with higher PRS levels, due to their higher “baseline risk” . Thus, pTo our knowledge, no previous study has directly compared the estimated impact of high red and processed meat consumption with predetermined polygenic risk to CRC. We compared the effect estimate of red and processed meat intake to the effect estimate of PRS using the novel concept of genetic risk equivalents, which expresses effect estimates for environmental or lifestyle risk factors in terms of percentile differences of genetic risk. Demonstrating that avoidance of such risk factors could potentially compensate for a substantial share of increased genetic risk might be helpful in communicating risk estimates and the potential for prevention. The large GRE for the group with the most frequent intake of red and processed meat estimated in our study underlines the importance of this dietary factor for CRC risk and underlines and illustrates the large preventive potential of lower consumption of red and processed meat.Our study has several strengths. The DACHS study is one of the largest population-based case–control studies on CRC. The comprehensive information provided by the study participants along with comprehensive genotyping enables thorough adjustment for potential confounders and interaction testing in multivariable analyses. In particular, it strongly extends the still very limited evidence on the potential interaction between red and processed meat intake and the PRS with respect to CRC risk. Furthermore, to the best of our knowledge, this is the first study communicating the risk of red and processed meat intake in terms of the equivalent difference in background genetic risk.There are also some limitations that merit consideration. First, ascertainment of red and processed meat intake was based on self-reports by a food frequency questionnaire with a limited number of items in each food group. Furthermore, only frequencies but not the amount of consumption were ascertained, which, along with imperfect reporting, is expected to have resulted in some misclassification and precluded more precise analyses of dose–response relationships. Second, controls less frequently consumed red and processed meat and thus might be more health conscious compared to cases with CRC. Additionally, only interviewed control participants who provided detailed information were included in the analyses. These points imply the potential of selection bias, which could have led to some overestimation of ORs and the corresponding GREs for red and processed meat intake, although we adjusted for some proxy measures of health consciousness such as education, history of colonoscopy, and fruit intake to reduce the potential influence of such bias in the current analysis. Third, although we controlled for a range of potential confounders, residual confounding related to CRC risk and meat intake may still be present. Fourth, this study was based on a Caucasian population and thus results need to be validated in other ethnic populations with other ethnicities and different genetic backgrounds, natural environments, and food consumption cultures. Fifth, we were unable to conduct analyses for specific CRC subtypes, given that tumor subtype information was only available for a subgroup of the study population and study power was thereby limited to address potential interactions of PRS and red and processed meat intake on the risk of specific subtypes of CRC . FurtherIn conclusion, our study provides evidence of a major contribution of frequent red and processed meat intake to increased CRC risk. In relative terms, this risk increase seems to be similar across various levels of PRS. At the same time the absence of multiplicative interaction implies that in absolute terms, the excess risk associated with frequent red and processed meat consumption is expected to be highest among those with higher genetic risk, who might therefore benefit most from restricting their red and processed meat consumption. The large GREs estimated for frequent red and processed meat consumption suggest that such restriction could compensate for a large share of increased genetic risk, which might be helpful in risk communication and preventive efforts. Further research should validate our results in populations with different ethnic backgrounds and different cultures and lifestyle habits.


Despite significant advances in the science of quality of care measurement over the last decade, approaches to developing quality of care indicators for global health priorities are not clearly defined. We conducted a scoping review of concepts and methods used to develop quality of healthcare indicators to better inform ongoing efforts towards a more harmonised approach to quality of care indicator development in global health.We conducted a systematic search of electronic databases, grey literature and references for articles on developing quality of care indicators for routine monitoring in all healthcare settings and populations, published in English between 2010 and 2020. We used well-established methods for article screening and selection, data extraction and management. Results were summarised using a descriptive analysis and a narrative synthesis.The 221 selected articles were largely from high-income settings (89%), particularly the USA (46%), Canada (9%), UK (9%) and Europe (17%). Quality of care indicators were developed mainly for healthcare providers (56%), for benchmarking or quality assurance (37%) and quality improvement (29%), in hospitals (32%) and primary care (26%), across many diseases. The terms ‘quality indicator’ and ‘quality measure’ were the most frequently encountered terms . Systematic approaches for quality of care indicator development emerged within national quality of care systems or through cross-country collaborations in high-income settings. Maternal, neonatal and child health (33%), mental health (26%) and primary care (57%) studies applied most components of systematic approaches, but not consistently or rigorously.The current evidence shows variations in concepts and approaches to developing quality of care indicators, with development and application mainly in high-income countries.Additional efforts are needed to propose ‘best-practice’ conceptual frameworks and methods for developing quality of care indicators to improve their utility in global health measurement. In 2015, the WHO prioritised improving quality of care (QoC) for women, new-borns and children and conceived a vision in which ‘Every woman, new-born, child and adolescent receives quality health services throughout the continuum of their life course and level of care’.4Several MNH measurement initiatives emerging from the Millennium Development Goals and the Sustainable Development Goals have generated a substantial volume of indicators, many of which partially overlapped and lacked adequate documentation or guidance.6–8Three major reports on the global quality of healthcare agenda highlighted the need for a health systems perspective and better QoC measurement in MNCH QoC programming.12This scoping review sought to describe and critically examine the literature between 2010 and 2020 on: (1) the terminology and concepts used in QoC metrics; (2) the purposes for the development of and use of QoC indicators and (3) methods used in QoC indicator development; with a view to better inform QoC indicator development in global health.In this article, QoC is defined as ‘the extent to which healthcare services provid desired health outcomes to individuals and patient populations. To achieve this, the care must be safe, effective, timely, efficient, equitable and people centred’.13 14https://osf.io/) in December 2020.This scoping review was guided by the adapted framework of Arksey and O’Malley and sought to capture the variability of QoC indicator development methods and concepts across diverse clinical and healthcare contexts.We searched PubMed, CINAHL/EBSCOhost, Embase, the Cochrane Library and Health Systems Evidence databases, using a search strategy based on MeSH terms . We also10.1136/bmjhci-2021-100469.supp1Supplementary dataWe included publications which described or applied methods to develop QoC indicators for routine monitoring in all healthcare settings and populations. All study designs, reviews, reports, book chapters and conference presentations published in English between 2010 and 2020 were included. We excluded studies of patient reported outcome measures (PROMs), patient reported experience measures (PREMs), quality of life, economic evaluations, evaluations of quality improvement interventions and publications that lacked sufficient rigour. ‘Seminal’ publications on developing QoC metrics prior to 2010 were included.The search results were loaded into Covidence for the screening of titles, abstracts, full texts and for data extraction.21We described the distribution of included studies by publication year, country, income level, healthcare setting, population or programme, study design, purpose (use and users) and methods or approaches to the development and assessment of QoC metrics. Qualitative data were constructed into themes for content analysis to provide an intuitive, perceptible view of the body of knowledge. Articles on developing QoC indicators for MNCH, mental health and primary care were analysed in greater depth. We assessed the rigour of this subset of studies, adapting criteria for QoC metrics development from several sources.18 22–24The literature search identified 7766 references, of which 1374 were duplications. We excluded 6017 after screening the titles and abstracts, and a further 154 after full text screening, resulting in a final dataset of 221 articles . Of thesThe studies were grouped into (1) Publications which described concepts or methods of developing QoC indicators , and (2) studies in which new QoC indicators were developed . We synthesised concepts and methods for developing QoC indicators from the first group, which provided a framework for analysis of the second group of studies.The terms ‘quality indicator’ (50%), ‘quality measure’ (21%), ‘performance measure’ (8%), ‘quality metric’ (6%) and ‘performance indicator’ (3%) were used as conceptual terms for QoC measurement. The term ‘quality measures’ predominated in USA publications, whereas ‘quality indicators’ was most frequent elsewhere. The terms were occasionally used interchangeably, with overlapping definitions of ‘quantitative, systematic, evidence based methods of measuring aspects of healthcare’, applied to ‘structures, processes and outcomes’ of care, and compared against a ‘standard’ of care.In the 221 studies, healthcare settings were mainly hospitals  followed by primary care facilities , and 22% of the studies were relevant across settings. The main topics were chronic diseases , mental health , child health , maternal health , surgery , cancer  and trauma care . Only six studies addressed infectious diseases, of which three focused on HIV care, two on antibiotic prescribing and one on tuberculosis control. The main purposes of developing QoC indicators were for benchmarking or quality assurance , quality improvement , testing and validation of the indicators , contracting or reimbursement  and local or international comparisons . Most studies indicated that the QoC indicators served multiple purposes. Targeted users were healthcare providers , researchers or measure developers , healthcare funders or payers , professional groups or organisations , policy makers  and regulatory or accreditation bodies . Most indicated relevance for multiple users.The methods of developing QoC indicators were refined for local purposes in the USA, the UK and several OECD countries through key institutions including the Institute of Medicine, the Agency for Healthcare Research and Quality (AHRQ), National Quality Forum (NQF), the RAND Corporation, The National Institute for Health and Care Excelence (NICE), the National Health Service (NHS) and numerous academic and research institutions.Conceptual frameworks clarify the purpose and focus for QoC indicators by defining what concepts or dimensions of quality of healthcare should be measured and how, in principle, they should be measured. Indicator frameworks for specific diseases have been developed using concept mapping with extensive stakeholder engagement.36 37Conceptual approaches to developing QoC indicators were either ‘deductive’ (from concept to data) or ‘inductive’ (from data to concepts).24 34The best quality evidence for QoC indicators is from well-designed randomised controlled trials, meta-analysis or systematic reviews.35 40 41The NQF criteria for the assessment and selection of QoC indicators include importance of the indicators, their scientific acceptability , usability, feasibility of measurement and whether there are any competing indicators.32 43Definitions of common selection criteria are provided in the 45Consensus methods, such as the Delphi process and Nominal group methods, address gaps or inconsistencies in the evidence, and synthesise accumulated expert opinion in selecting final indicators.24Field testing involves field or pilot studies in settings where the QoC indicators are to be used, preferably with the involvement of the intended users, to determine the availability of data for the QoC indicators, any potential burden for data collection, and the utility of indicators in relation to the intended use.We used the above ‘best practice’ methods to guide a sub-analysis of MNCH studies (n=33), mental healthcare (n=26) and primary care (n=57) as reported in As shown in As shown in We characterised the QoC measurement landscape for the period 2010–2020, in terms of the rationale, key concepts and methods used to develop QoC indicators. Terms for QoC metrics tended to be consistent within countries, with ‘quality measures’ used almost exclusively in USA and ‘quality indicators’ used elsewhere. Many studies did not define their terms, or used terms interchangeably. Wider agreement on common concepts and terms is needed in developing QoC indicators for global purposes.32The QoC landscape was strongly influenced by the USA, the UK and OECD countries, with a focus on diseases prevalent in these countries. The few publications from LMICs focused mainly on local testing of global MNH indicators. The leading HICs had national policy frameworks, and well-functioning systems for the assessment of the QoC for accreditation, reimbursement, public disclosure and quality improvement.Despite extensive experience and rigour in the development of paediatric QoC indicators for use at micro and meso levels in HICs for quality improvement and accountability, there was limited translation of these practices to the development of global MNCH metrics.45In the field of mental health, pressure from healthcare and payment reforms led to development of a large number of quality indicators. Less than 10% of more than 500 behavioural health measures in the USA were used in major quality reporting programmes or were endorsed by the NQF.54 55This highlights some of the challenges to identifying a set of common indicators for global QoC, including varying expert opinions and interpretation of the evidence within different settings.57Other important considerations identified were the types of indicators, their purpose and the criteria used for selection of global indicators.14For cross-country comparisons, outcome and impact measures represent the endpoints of QoC at a macro level by assessing whether the health system is achieving the desired goals and meeting the patients’ needs.10Careful consideration is also needed for criteria for scientific appropriateness of global indicators. Direct comparisons of care should only be made when guidelines and criteria are similar, requiring a strong international evidence base for such guidelines and indicators.14There is a need to differentiate criteria to select global indicators based on the intended purpose of the indicators in terms of use, users and the level of use in health systems.58The measurement of QoC is a broad and complex field including many dimensions, perspectives, approaches and settings. Our review focused on methods of developing routine, largely quantitative QoC indicators in healthcare settings. We did not review methods of developing PREMs or PROMs, economic evaluations, nor of measures to evaluate quality improvement interventions. The language and time period restrictions may have excluded other relevant studies. The included studies were mainly from HICs, indicating a substantial gap in evidence on the development of QoC indicators in LMICs or for global purposes.Adequate national QoC and data infrastructure systems, with supportive cross-country collaborations, are fundamental to the development and use of global QoC indicators. The Lancet Commission advocated the development of ‘country-led’ QoC measurements systems, and the strengthening of national health information systems to facilitate the measurement of QoC.Our review shows variations in concepts and approaches used to develop QoC indicators, with development and application of such indicators being mainly in HICs. Additional research efforts are needed to propose ‘best-practice’ conceptual frameworks and methods for developing QoC indicators to improve their utility in global health measurement.