Background: Persons who simulate patients during medical education understand the routines and the underlying script of medical consultations better. We aimed to explore how simulated patients (SPs) integrated this new understanding into their daily life, how this work affected their private life as patients, and what we can learn from these changes for concepts of empowerment.Design, setting, and participants: A qualitative interview study. All SPs of Göttingen medical school who had been working longer than three semesters (n=14) were invited and agreed to take part in an open interview about their daily experience with real doctors. Documentary method was used to identify the main issues. Several cases were chosen according to maximum contrast and analysed by in-depth analysis to provide vivid examples of how simulations may affect the real life of the SPs as patients.Results: Our analysis revealed three main changes in the behaviour of SPs as real patients. They were more attentive, had a better understanding of the circumstances under which doctors work, and acted more self-confidently. From the selected cases it became apparent that working as a SP may lead to a constant and significant decrease of fear of hospitals and medical procedures or, in other cases, may enable the SPs to develop new abilities for giving feedback, questioning procedures, and explanations for real doctors.Conclusion: working as a simulated patient seems to be well-suited to understand own progression of diseases, to increase self-responsibility and to a confident attitude as patient. Working with simulated patients (SPs) is a widely accepted method for effective teaching and assessment in medical schools , 2], , . In addition to many positive effects on medical education, the persons who simulate patients understand the routines and the underlying script of medical examinations better. Previous studies suggest that experiences as SP, especially the activity in role-playing and feedback-training, influence the role of the SPs as real patients. Some previous studies have investigated the scope of this influence on a person’s behaviour as a patient , 6], , , 9]. Ap. Ap9]. A In addition to previous studies, which predominantly used surveys or focus groups , 6], , , 13], ,  to recorWorking with simulated patients as a teaching method was introduced at Göttingen medical school in 2005. Since then, all SPs have been trained and supervised by one of the authors (AS). Similar to most other medical schools, the main components of our SP training are communication skills such as history taking, breaking bad news, or counselling and risk-communication as well as assessment in objective structured clinical examination (OSCEs) and the medical school admission-procedure , 4], , . To ensure that the study participants had professional skills, we only invited the 14 SPs who had been working with third- and fourth-year students longer than three semesters and in addition had attended OSCEs at least four times per semester. They all agreed to take part in our study. All participants had to give written informed consent; it was possible to withdraw this at any time. The ethics committee of the University of Göttingen approved the study protocol (no 12/4/08).To stimulate narratives of how the SPs dealt with their work, we developed an interview guide using open ended questions focusing on three main areas: poor and good elements in our lessons, teaching of the doctor-patient relationship in our course, and the SPs’ experience with their real doctors. In this paper we focus on the third area. All interviews were conducted by the same person (TL). After a short introduction of the study aim, we created a relaxed and familiar atmosphere to give the participants the opportunity to narrate their experiences. If the participants did not address the third question of their own volition in the course of the interview, they were asked: “What happens when you are a patient in real life? Please tell me about your daily experiences”.After piloting the interview changed slightly. TL conducted all the interviews, they were audio-taped and transcribed verbatim; participants were pseudonymised.The semi-structured interviews should consider the main points of the interview-partners, so the documentary method according to Bohnsack  ,17] se se17] seThe interviews were analysed in two ways: To analyse central topics mentioned in the interviews, we used the first step of the documentary method according to Bohnsack, his concept of “formulating interpretation”. After reading each transcript, all narrations were summarized, and main topics as well as sub-topics were formulated using an inductive approach. This step refers to the content of the interview and provides a broad overview of what was said in the interview. On the basis of the first step of analysis, we then identified several cases that represented quite distinct ways of “handling the work as a SP according to maximum contrast. These passages were analysed with the second step of Bohnsacks approach, the “reflecting interpretation”. We concentrated on “how something is said”, who was involved in the events, when and where the events took place and which feelings were reported in order to illustrate both different types of SPs and different types of transferring new skills into real-life consultations.All eligible SPs (n=14) agreed to take part in the study, nearly all of them were female (12/14). They were between 24 and 70 years old and had been working as SP for between two and six years. The interviews lasted between 20 and 55 minutes and took place in our department or at the home of the SPs.In the interviews, the SPs freely talked about their daily experiences as a patient in real life. The many simulated consultations they took part in while they were SPs seemed to have activated a learning process that led to (a higher) awareness of structure, rules, and content of consultations in daily life. Three main topics emerged in our analysis of the SPs’ practical knowledge in real consultations with doctors: they were more attentive, had a better understanding of the circumstances under which doctors work, and acted more self-confidently. Although these topics are presented separately here, in daily practice they are closely related. Training in simulation and the skills as SP obviously helped our interview partners to better understand the structure of the doctor-patient communication. Within the consultation, SPs no longer only fill the role as a patient seeking for help, but also act as persons who are familiar with attentive evaluation. This attentiveness enabled the SPs to have a critical view of details of the consultation and the GPs’ behaviour, which led them to adopt a critical attitude.SP 2: “Well, what is really clear to me now, somehow, so just my GP [general practitioner] (...) when you are consulting him, he is always asking a lot of round-about questions somehow, how is your situation, and so on, and in the past I thought: oh my God, I am ill, that‘s got nothing to do with it. But now: (...) through these role-plays I have realized, ok: the social history and all these things… (...) that‘s why he is asking, and those are the ideas he is thinking of.”SP 9: “Yes, of course, I check the way how he (GP) enters the room. That is the result of these – these role-plays. How is he entering the room? Does he shake my hand? Does he look at me when shaking hands? Or is he doing something else meanwhile? Does he allow me to say something?” SP 4: ”It does happen, on occasion, that I view my doctor with different eyes, as it were, and think: now here he goes again, just almost falls into the examination room, didn’t even greet me properly, or lounges in his chair, or doesn’t even look at me or continuously interrupts what I’m saying.“Through working with medical staff as a part of the medical training and curriculum, SPs had a more detailed idea of what it means to work as a doctor, of the high expectations made on a doctor, and of workload. On the basis of this insight, they developed and understanding of the circumstances under which doctors work even though the doctors are often stressed or despite their often unfriendly behaviour in the consultation, and they were obviously not afraid to address this observation.SP 6: … “and, um, it happened (...), after an accident in stage that I had to go to the emergency room in the morning (...) and there I met a really ill-tempered surgeon, really out of sorts, and he was short with me and then I said: you probably had a tough night? And he says: do you really see that? I say: you are not happy and you are a bit grumpy with me, and then he started to apologize.” SP 1: …"but my perception and also my appreciation changed in relation to my doctor. So I am thinking: Oh, he really has time for me, and he engages in a detailed conversation in spite of the short time and small budget (…). Improved attentiveness and communication-related knowledge gained by SP training and activity seem to enable SPs to be more self-confident patients in the consultation. Many of the participating SPs felt encouraged to express their own needs to act more as “expert“ for their own matters. SP 11: “ I’m not afraid, afraid in quotation marks, if you wish, I am not reluctant to talk about stuff I notice, and I notice more than I did before”.SP 9: “ I’ve become more ready to criticize, I dare to question more things, and well, this doesn’t always go so well, but – it has helped me because – the view I have of myself as a patient has changed, my self-confidence has increased”.SP 9: …”and it has even happened that I take the liberty to say: I would like to say something as well”.The three cases we selected for the second part of the analysis are examples of how the experience of being a SP and the feedback training may influence the everyday life of SPs, especially in their real life as patients. Lisa represents a group of SPs who acquired a new look at the health system and its actors and learned how to become more self-confident, more active and more communicative. Maria stands for SPs who had already been acquainted with the medical world and had a relaxed attitude towards doctors but keep a critical eye on medicine and doctors. Barbara is an outstanding case with a unique selling point insofar as she attributes her SP training a psychotherapeutic effect so that she meanwhile lost her fear of hospitals and doctors.Lisa (SP6) : educator even outside the medical schoolLisa, 68 years old, has been working as an SP for four years and convincingly demonstrates self-confidence in the context of her work as SP as well as during the interview. This might be a result of her professional career as a teacher. Some years ago, she was diagnosed with a chronic disease and still has to visit several doctors frequently. However, in her everyday life she is only mildly affected by her disease. She is engaged in different social projects. Lisa is, among other things, active in the city’s cultural life and helps families with members who are suffering from dementia. It is her aim to transfer the skills she learned during the years working as a SP into her real life. Lisa felt a diffuse dissatisfaction with some doctors she met during the past years. Working as a SP enabled her for the first time to describe this feeling. Correspondingly, today she would give instant feedback in case of inappropriate behaviour and, if necessary, question a doctor’s procedures and explanations:“…. um, and I’ve become highly critical of this meanwhile, (...) yes, I question everything.“She exemplified this new ability by referring to a rather uncomfortable consultation with her GP, characterized by no greeting and a very short communication-style:”…and then I just told her, well, you know, I’ve come to you here with a pounding heart, told you about what I feel, (...) I didn’t say that I’m an SP, that I didn’t say, of course, and I said, I actually expected that you’d be aware of me from the beginning. (...) And then she said goodbye with a handshake and said ’See you again soon’. That’s when I thought, maybe she’s learned something. (...) Well, I wouldn’t have had that courage before.“Like other patients (see above), Lisa developed a better understanding of her GP after she learned more about a GP‘s everyday life and workload in our courses. The following quote shows how she changed her patient behaviour accordingly:“…ok, when I have to visit a doctor now, I should be as precise as possible in describing what ails me, maybe write it up as a short list so I don’t waffle and also so I don’t overtax the doctor in his office“ „I as a patient need to have some empathy for the doctor, too.“In her opinion, all patients should have her new knowledge about doctor’s night shifts, workload, and documentation requirements.Maria(SP 10) a: simulation as a professional world of its ownMaria, 55 years old, formerly worked as the personal assistant of a head of department in the university hospital for many years. She has been working with us for three years. Apart from a little physical handicap she is an active person visiting the “university of the third age”. She is also working with the Samaritan emergency hotline for young people. As our interviews showed, many SPs generally described the doctor-patient-interaction as asymmetric. Maria, however, knows the routines of different medical environments very well and showed a sort of familiarity with medical institutions and personnel. This is more than the understanding of doctors other SPs reported in the course of their teaching activities. Instead, personality, professional skills, and teaching activities might all influence and motivate her more pragmatic view on, and a sober description of, doctors:“At the time, or after the time that I um worked together with doctors, much had changed already. Umm, I think I can judge situations involving doctors more objectively now, because of this situation . (...) A doctor is a doctor, nothing else, in my opinion umm, that is just the same as if there’d be a plumber in my flat.“More than others, Maria realized the wide difference between teaching lessons and real life, perhaps due to her expertise and relaxed attitude towards doctors.“Speaking as a patient, I just have to say that um I’ve experienced this at it’s worst and it makes me smile now, after the facts, particularly in the roles I’m in now; for instance, there was a situation where I had a doctor’s visit scheduled for myself and was an SP in the afternoon, and it was just exactly and glaringly the opposite”.”….umm, I’d say the aim of this all would be the ideal case for the patient, I myself have witnessed this only very rarely, umm I just have to add this here, that was the reason for me (...) why I do this.“The intimate knowledge from her professional career—and not empathy with doctors, as found in other SPs—seems to have been the reason she emphasized time as the most valuable and rare commodity in a GP’s real life:”…umm, the teaching situation is set up so that the doctor is there for the patient and gives him the chance to express himself and find out what the problem is, which is of course also the goal of any normal office or any visit to a doctor’s, but very often the doctor needs to watch the time he’s taking, that is frequently very obvious“.Barbara (SP3) : working as an SP as “therapy” Barbara, 59 years old, housewife and socially active within her community, has been working as an SP for three years. During the first part of the interview, she did not talk much about private matters and presented herself somewhat like a ‘blank slate’. Later in the interview, the analysis revealed that her motivation for becoming an SP was closely related to her painful experiences as a patient more than 30 years ago when she had to have a caesarean.The gynecologist was very insensitive during a teaching-situation in which Barbara was involved . She remembered that the gynecologist shouted loudly, ‘now don’t make such a fuss!’ Barbara imitated the doctor’s intonation as closely as possible during the interview situation 35 years later; this illustrates how emotionally disturbing this incident was. These few words from the hospital doctor hurt her for years and prompted fear towards hospitals for a long time:“When I’m telling you this now, my heart still begins to pound wildly and I just feel like blubbing again”. Since some of our courses took place in the same hospital in which Barbara had consulted the gynecologist 35 years before, she had to visit the house regularly as an SP. Obviously, both events, the regular visits to the hospital and the SP activity, helped her overcome her fears of the institution:”Lost, this word lost, I’ve always felt so lost in hospitals. Um, and, um, was afraid that no one would help me there. ... Working as an SP has helped me accept this particular hospital that I visit twice a year when the exams are on (OSCE), I’ve always been terrified of hospitals. I can move in a hospital very casually now, that is something really exceptional for me, of course. This changed a lot (...), I’d guess I am about 70% less afraid of hospitals. That has changed.“Moreover, because of her training and teaching activities, Barbara, similarly to other SPs, felt more self-confident in the medical context. Consequently, she now tries to support her own cause vis-à-vis the doctors. “If something happened to me like the situation I told you about. I’d never allow that to happen to me again.”Working as an SP enabled our interview partners to act more self-confidently in their real lives as patients, made them more sensitive towards a GP’s workload and duties, and may even introduce an intense change of the emotional state such as a reduction of anxiety. Feedback-training and learning new communication skills, similar to the training and work of our SPs, seem to be well-suited to empower patients in consultations with real doctors . Our results confirm findings from the United States and the Netherlands 10-12] where the experience of working as SPs was described in the context of becoming more attentive and critical and consequently feel more autonomous in medical environments. We know from two American studies -12 where that SPsThis raises the question of whether there is a “need to worry for GPs, because they face ‘supercritical’ patients”. In some instances, SPs apparently drew severe consequences, as reported by Woodward and Glivia-McConvey : Some chOur analysis did not show any negative effects on the well-being of the SPs. This is in contrast to the Dutch studies performed by Bokken  and collTraining SPs and working as SPs may be a model of how to become an empowered patient. The results of our study highlight important components of this training and work, such as becoming more attentive and critical and feeling more autonomous in medical environments . In addiIn spite of identical training, the teaching activities of Barbara, Lisa, and Maria led to different consequences in their daily lives:Barbara’s case  shows a constellation that to our knowledge has not been described to date: a traumatic event that causes fear of and aversion to hospitals was changed by her time as an SP. Barbara transformed this negative event into a motivation to be part of a teaching team in a medical school, obviously a successful coping strategy to overcome her fears. It is important to emphasize that it was not this negative event that motivated Barbara to become an SP, but the job helped her in the real life as a patient, and this made her SP activity more important to her. Lisa represents another type of SP: educator even outside the medical school. As a highly skillful patient, she had the motivation to transport her expertise into her everyday-life . The quality standards she learned during teaching lessons should be also standard in her real relationship with physicians. This type of SP sets out to change the students’ as well as a doctor’s behaviour, not only for short duration, as described by Rubin , [, [Maria’ssional’ , which eThe interviews used open-ended questions, which afforded our interview partners the opportunity to set their own focus on facts and experiences that were relevant in their work as SP and in their real life. Data analysis with a multi-disciplinary team provides a good basis for detecting and examining relevant events and experiences.While we certainly have a complete picture of our own SP staff, the results are not representative for SPs in Germany. Training and teaching in other medical schools may be different and, thus, the knowledge of SPs in other settings and the consequences for their life may likewise be different. The sampling of our interview partners and analysis did not follow the concept of theoretical sampling, so that we cannot be certain to have reached data saturation . MoreovePersonal background, experiences, and motivation of SPs were mixed to various degrees, but were predictably different for each SP. Role-playing may support acting more self-confidently or improve the understanding of doctors, or it may motivate SPs to share knowledge, insights, and ideas with others, as in the case of Maria. As we know from other studies , fear, iIf the empowerment of SP through their job also is true at other locations, this knowledge should be used in casting and teaching situations. SPs and trainer should know about these findings and then would be able to include them during SP-training.Working as an SP seems to empower patients. Future research should explore how some of the SP teaching components can be transferred into other educational settings to support and train real patients who are interested to take a more active role in health care consultations. We thank the SPs we interviewed for their attendance. We thank Kathrin Püschel for helping with the data analysis.PD Dr. ANNE SIMMENROTH-NAYDA, is working as a researcher and family physician. Areas of interest: medical education, simulated patients, clinical medicine.GABRIELLA MARX, PhD, is working as a researcher in the Palliative Medicine of Göttingen Medical Center. THORSTEN LORKOWSKI, MD, wrote his doctoral thesis about simulated patients in medical teaching. He is working as resident in the Buxtehude Hospital.WOLFGANG HIMMEL, PhD, works as senior lecturer in health sciences. Areas of interest: doctor-patient relationship; health services research.The authors declare that they have no competing interests.


Consumer health information technology (IT) solutions are designed to support patient health management and have the ability to facilitate patients’ health information communication with their social networks. However, there is a need for consumer health IT solutions to align with patients’ health management preferences for increased adoption of the technology. It may be possible to gain an understanding of patients’ needs for consumer health IT supporting their health information communication with social networks by explicating how they have adopted and adapted social networking sites, such as Facebook, for this purpose.Our aim was to characterize patients’ use of all communication mechanisms within Facebook for health information communication to provide insight into how consumer health IT solutions may be better designed to meet patients’ communication needs and preferences.This study analyzed data about Facebook communication mechanisms use from a larger, three-phase, sequential, mixed-methods study. We report here on the results of the study’s first phase: qualitative interviews (N=25). Participants were over 18, used Facebook, were residents or citizens of the United States, spoke English, and had a diagnosis consistent with type 2 diabetes. Participants were recruited through Facebook groups and pages. Participant interviews were conducted via Skype or telephone between July and September 2014. Data analysis was grounded in qualitative content analysis and the initial coding framework was informed by the findings of a previous study.Participants’ rationales for the use or disuse of a particular Facebook mechanism to communicate health information reflected six broad themes: (1) characteristics and circumstances of the person, (2) characteristics and circumstances of the relationship, (3) structure and composition of the social network, (4) content of the information, (5) communication purpose, and (6) attributes of the technology.The results of this study showed that participants consider multiple factors when choosing a Facebook mechanism for health information communication. Factors included what information they intended to share, what they were trying to accomplish, attributes of technology, and attributes and communication practices of their social networks. There is a need for consumer health IT that allows for a range of choices to suit the intersectionality of participants’ rationales. Technology that better meets patients’ needs may lead to better self-management of health conditions, and therefore, improve overall health outcomes. Recent government initiatives encouraging the development and implementation of health information technology (IT) have expanded the definition of health care delivery locations to include home and community environments . With eaIt is imperative that consumer health IT is designed to align with patients’ health management needs -11. One Designing consumer health IT that effectively supports health information communication between patients and their social network members requires gaining a deep understanding of existing communication practices. Such an effort may generate both descriptive  and prescriptive  design guidance . SeveralIn this study, we use Facebook as a case study from which to draw design guidance for consumer health IT that supports health information communication between patients and their social networks. Facebook was selected as an object of study because it is a general information technology that takes the form of an SNS rather than consumer health IT. Furthermore, its popularity, with 70% of site users engaged daily , and usaPrevious research on health information communication on Facebook has primarily sought to understand how patients use the group mechanism. Patients’ interactions on health-related Facebook groups are structured around informational and emotional support and community building ,35-39. MWhile these previous studies make meaningful contributions to our understanding of how patients engage with Facebook groups for health information communication, they lack insight into how and why patients engage with other Facebook mechanisms to communicate information about their health. Expanding analysis efforts to encompass other Facebook mechanisms enables understanding of how patients communicate not only with others with similar diagnoses , but how they communicate health information with their larger social networks . Accordingly, the purpose of this study was to characterize patients’ rationales for using diverse communication mechanisms within Facebook for health information communication, each of which presents the Facebook user with a choice regarding who is the target audience, whether the communication is synchronous or asynchronous, and whether the communication is relatively active or passive. From this analysis, we hope to provide insight into how consumer health IT may be better designed to meet patients’ health information communication needs and preferences.This study analyzed data from a larger, three-phase, sequential, mixed-methods study. The larger study’s first phase used in-depth participant interviews (N=25) to gain a broad understanding of patients’ health information communication practices on Facebook. These interviews are the focus of this paper.Eligible study participants self-reported in a pre-study survey that they were over 18, used Facebook, were residents or citizens of the United States, spoke English, and had a diagnosis consistent with type 2 diabetes. Type 2 diabetes was the focus of this study because it is a chronic disease that is highly prevalent, requires intense personal engagement, and disproportionately affects underserved populations . The UniThe recruitment process has previously been described in detail . In shorSemistructured interviews were conducted via Skype or telephone between July and September 2014 and ranged from approximately 21 minutes to 68 minutes in length (average=43 minutes). Participants were asked about their general use of Facebook , how they used specific Facebook mechanisms , and their Facebook-related privacy concerns and settings . Participants were next asked systematically about components of their health information communication work system, including to whom and why health information is communicated , what and how health information is communicated , and how factors such as their economic, political, cultural, and health statuses impacted their health information communication practices  ,46. All Data analysis was grounded in qualitative content analysis  and faciA total of 25 individuals participated in the interviews. Most were female and between the ages of 30 and 64. All major racial and ethnicity categories were represented. The majority of participants were white and non-Hispanic. All participants had received at least a high school diploma or equivalent and most participants worked full time (35 hours/week or more). Individuals from all marital statuses, household incomes, and geographic regions were represented. The majority of participants were married, had a yearly household income between US$75,000 and $149,000 and were from suburban areas. Individuals represented all brackets of self-rated health status and years with type 2 diabetes. Over half of the participants rated their health as good and had been diagnosed with diabetes for 3-19 years. Most participants used Facebook more than once a day. Sample characteristics are shown in Participants’ rationales for the use of a particular mechanism to communicate health information reflected six broad themes. Each theme represents the types of rationales provided for communicating or not communicating health information through a specific Facebook mechanism: (1) characteristics and circumstances of the person, (2) characteristics and circumstances of the relationship, (3) structure and composition of the social network, (4) content of the information, (5) communication purpose, and (6) attributes of the technology. Participants’ responses to open-ended questions are presented verbatim to provide evidence for analytical categories. The quotes selected are representative rather than exhaustive of the analytic category. It is important to note that the multidimensionality of participants’ rationales means that an illustrative quote may contain more than one meaning .Participants’ choice of Facebook communication mechanism reflected their own and their social network members’ characteristics and/or circumstances.Participants reflected on the time they had available to use specific Facebook mechanisms for health information communication. Some participants noted that posting health information on one’s timeline would result in the post being available to view by most of their social network and that the publicity of such messages would result in undesired feedback and consume their time for response:"I would post, ‘Hey, I have some kind of issue with my kidneys.’ All that’s gonna do is open up, ‘What kind of issue? Oh my gosh, are you okay? What are they gonna do?’ I have no room to answer a million questions."173, F, Black or African American, 30-49Participants discussed the role of their and their social network members’ health-related knowledge and experience. They stressed the importance of not posting health information about which they had limited knowledge to their own or friends’ timelines on Facebook:"[T]here’s a lot of stuff that comes in on a feed on your Facebook...I am not going to share something that I don’t know anything about."69, F, Hispanic or Latino, Other race, 50-64Participants also considered the health-related knowledge and similarities in experiences of individuals that could be reached through a specific Facebook mechanism: "If I have an issue going on and maybe I want to know if someone else has experienced the same issues, I want to know if they tried out a certain product before I buy it. I may post that in the discussion board for that diabetes group."90, F, Declined to answer race, 30-49Moreover, participants stressed the ability to reach individuals with diverse knowledge and experience using the group mechanism:"Groups has a wide variety of people, and they’ve got lots of information, different attitudes about it, different answers. I can get a wide variety from those people."120, F, White, 50-64Participants noted that their overall dispositions played major roles in determining how they communicated health information on Facebook. Shyness, depression, and feeling tired all deterred participants from using public mechanisms of communication such as their own timeline or groups. Participants also recognized that specific moods altered their approaches to using these mechanisms for health information communication:"Well, in terms of images of myself, personally, I’m a little insecure about my weight and that kind of stuff, so unless I’m really in a good mood or something...when I was relaxed or whatever, I wasn’t too shy about posting those kinda pictures—me sitting on the island or something like that. That’s the primary reason. Appearance."11, M, Black or African American, 30-49Social network members’ patterns of communication mechanism use also influenced participants. Specifically, others’ degree of engagement with specific mechanisms impacted participants’ frequency and likelihood of use. Participants engaged with a communication mechanism when they knew that the social network member that they were trying to reach would be available through that mechanism: "[Messenger is] a fast form of communication with some people like my Weight Watchers leader. She’s on messenger all the time."185, F, White, 65+Participants’ decision of whether or not to engage with communication mechanisms involving multiple individuals similarly depended in part on the level of group activity. Thus, one participant noted that even though there are many people in his Facebook groups, there are not many that are active members, and expressed:"...if people were more active, or more communicative, I would be the same way."11, M, Black or African American, 30-49Participants’ states of well-being determined how they communicated health information through Facebook. Certain Facebook mechanisms deterred participants with physical limitations because of the normative length of the message exchanged via that mechanism:"I can’t see well, and a lot of times my fingers hurt bad, and I don’t like to private message because of that."120, F, White, 50-64However, participants also expressed reaching out to others in their social network broadly through groups and posting on timelines when facing poor health:"Primarily I’ve been well, since I signed onto Facebook. There’s always a chance that yeah, if I was feeling under the weather I would put a post on there, just so everyone would know."130, M, White, 65+Participants’ choice of Facebook communication mechanism reflected characteristics and circumstances of the relationships between them and their social network members.The roles that social network members played in participants’ everyday lives  influenced the choice of communication mechanism on Facebook. For example, participants posted on their own and friends’ timelines simply because of the nature of the relationship: "[T]he choice of my friends are all people that have done the same thing I did, are working hard, making an income, taking care of themselves. The fact that they’re my friends is why I’m posting to them, and we have a lot in common."130, M, White, 65+The established communication patterns between participants and their social network members influenced the choice of Facebook mechanism for health information communication. Participants noted that they used certain Facebook mechanisms habitually to communicate to specific social network members and that their communication of health information to the same individuals followed this pre-existing routine: "...once they know that there’s something, that you’ve got this problem, then talking back and forth on Facebook [messages]—because, as I said, that’s the way we do a lot of our conversing."114, F, Black or African American, 50-64Likewise, established communication patterns hindered the communication of health information via the same mechanisms:"Pretty much the people that I message are not ones that I share the diabetes information with."139, F, White, 30-49Participants’ choice of Facebook communication mechanism reflected the structure and composition of participants’ and their social network members’ social networks.The degree of interconnectedness between participants and members of their social networks influenced the use of some Facebook mechanisms for health information communication. Often participants were concerned that the information posted on Facebook timelines would be brought into offline conversations with mutual friends:"I would be very careful about what I’d say about someone else because so many of my friends are interconnected."55, F, White, 65+Participants acknowledged that the ability of certain Facebook mechanisms to reach friends of friends was useful when wanting to provide support to other type 2 diabetes patients. A few mentioned sharing pages related to diabetes on their timelines for the benefit of people beyond their immediate Facebook social network:"I share some pages for diabetes, cuz I do know some people that have it or maybe their spouses. If I see anything that I like, I like somebody else to see it. Cuz not everybody gets the same feed. I might share a page."69, F, Hispanic or Latino, Other race, 50-64Participants stressed that certain Facebook mechanisms gave them access to information and support not available to them through existing social network members. This was particularly true of the group mechanism:"I think the reason why I’m in those groups, though, is because I was kind of pissed off that there was really no help that was worth anything from my doctor. I mean she gave me some general stuff, but nothing that was of any substance. That’s kinda why I participate in the groups."92, M, White, 30-49Participants’ choice of Facebook communication mechanism reflected the substance of the health information.Participants considered the seriousness of their messages. For instance, one participant noted that she did not consider one piece of information to be major or serious and therefore felt the information was appropriate to communicate using Facebook messages:"[Y]ou know, at that time, it didn’t make sense for me to sit and try to call 10 different people, I could do it in like two or three minutes on Facebook. It wasn’t something that was major, serious, or deathly, it was something that [my mother] had been through a number of times before."114, F, Black or African American, 50-64The degree to which participants considered the health information to be private influenced their use of Facebook mechanisms. For example, one participant felt that general health information unrelated to her diabetes was appropriate for her Facebook timeline, but that private health information should not be discussed using this mechanism: "I wouldn’t talk about, like I said, anything that was, that I consider very, very, very private—but general stuff, I mean, if you look and you see my leg is broke, I don’t see why I can’t talk about a broken leg on Facebook."114, F, Black or African American, 50-64The emotional weight of the health information also influenced the use of Facebook mechanism. Participants acknowledged that some health information would invoke strong reactions from their social network members. The intensity of these messages determined which Facebook communication mechanism, if any, was used:"[S]ay I had a diagnosis of cancer or anything, a diagnosis that I knew would really be shocking to someone, I would tell them face to face. I wouldn’t send my sister or brother a Facebook message and say, “Oh, by the way, I've got cancer.” I wouldn’t do that. I would personally call them."114, F, Black or African American, 50-64A majority of participants described the use of Facebook groups when discussing a particular diabetes topic, expressing that this mechanism was more appropriate than discussing this type of detailed information on their timelines. Furthermore, participants explained the relationship between level of specialization and communication via Facebook groups:"In the groups, it’s specifically for something special. I might be a member of the Rheumatoid Arthritis page, and we’ll be talking about methotrexate or something. If I posted something about methotrexate on my newsfeed, 80 percent of the people are not going to have a clue what I’m talking about…I can be more specific on the group pages."120, F, White, 50-64The Facebook mechanism used was also determined by the perceived novelty of the health information. When such information was perceived as relevant to many individuals, participants used the sharing mechanism or posted to their timelines:"I may see something in a diabetes group on Facebook, go click on it, “Oh, that’s really interesting. I’m gonna share it,” and go back to Facebook and share it and put it on my page. That’s typically how I do it. On occasion, I’ll see something through another source, read it, “Oh that’s interesting,” and click on it and share it on Facebook that way."139, F, White, 30-49Participants also considered how relevant the health information was to what was typically communicated through the Facebook mechanism:"Because it’s relevant to the group that I’m part of. Mostly because it’s relevant or it’s relevant to a conversation that’s occurring in the group or within an individual conversation."33, F, White, 50-64Even if participants believed in the relevance of the information to a specific individual, they sometimes used mechanisms that had a wider reach instead of imposing the information on a specific person:"They’re just things [posted to own timeline] that I’m interested in and may be able to help other people. I don’t really—putting it on their timeline is kind of like ‘pushy’."33, F, White, 50-64The existence and availability of health information to others in their Facebook network influenced participants’ use of mechanisms for communicating health information. Participants used mechanisms targeted to a wider social network when they believed the information they were sharing was not well known to this audience. For example, one participant focused on the relative lack of information regarding type 2 diabetes:"I would say just because I feel like there is not enough people talking about type 2 diabetes, it shapes my posts in the sense that I post a lot about diabetes health. It has made me—my health status has made me an advocate for informing other people about type 2 diabetes."173, F, Black or African American, 30-49Participants’ choice of Facebook communication mechanism reflected the goals they sought to achieve in relation to their health information.Participants sought to use the Facebook mechanism they felt would ensure a more personal connection when communicating health information. For the majority of participants, preserving this connection was achieved by using the private messaging mechanism:"It’s a private thing, and it’s personal; so people are more likely to respond to personal messages."173, F, Black or African American, 30-49Participants’ rationales for using specific Facebook mechanisms to communicate health information included reflection on the degree of convenience versus hardship on themselves and others. The ability to use certain Facebook mechanisms like messages to address a specific group was mentioned by participants as more convenient than other mechanisms requiring one-on-one interaction: "Sometimes it’s easier to get a blanket statement out there, especially to the friends."146, M, White, 30-49Similarly, mechanisms that did not require sifting through previous communications were also seen as more convenient:"If I had previously spoken to someone about a problem that I’ve had, or a problem that they have had. Then, that post is now I don’t know where, and I feel that I have an additional bit of information that they could use, then I might tag them on that. I write it on my timeline and just say, “So-and-so, I just thought I would share this with you."3, F, Asian, 50-64Private messages were also mentioned as a means of reducing discomfort that could come from confronting someone in a public forum such as a Facebook timeline:"If I see somebody giving [misleading health information] or leading a person, I feel, astray, then I will send them a private message versus putting somebody on the spot right there, calling someone out."114, F, Black or African American, 50-64The ability of the Facebook mechanism to allow for a message to reach the intended audience was a motivating factor for use by some participants. When considering the ability to obtain responses quickly, one participant explained: "The groups are between 500 to 3,000 people…there’s going to be more people online at any given time to give you instant feedback."33, F, White, 50-64The participant also stated that having more group members helped him find:"...somebody to sympathize with or to share information with or to get information from."33, F, White, 50-64Another participant posted on Facebook immediately after obtaining the result of an exam that indicated potential need for retinal surgery, so that his doctor would receive the message: "I did that primarily because my eye doctor reads that, so that as soon as he sees it he’s gonna call me and we’re gonna talk about it on the phone."130, M, White, 65+Moreover, some participants noted that communicating health information on friends’ timelines would be considered a last resort if they could not reach members of their social network by other means:"Maybe if I was dying then I would post something on my best friend’s timeline to get her attention if I could not reach her by telephone, or couldn’t reach her family or mom or anybody, then maybe I would do that. It would be a last resort."90, F, Declined to answer race, 30-49Participants reflected on the goal of maintaining online security when deciding to use one Facebook mechanism over another. In particular, some participants favored use of mechanisms that restricted communication to one or a few individuals in order to maintain security of their information: "If I don’t want—if I’m on one of my group pages, and I don’t want all those strangers to know what’s going on, I would use the private messaging to go back and forth with someone.” 120, F, White, 50-64Participants’ social network members also eased their online security concerns about communicating through more public forums, such as Facebook groups: "It would depend. This particular instance, your group was referred to me by someone I knew very well. I felt comfortable doing that. I don’t necessarily trust other groups. I don’t know what their guidelines for their privacy and all that are."120, F, White, 50-64Participants used Facebook mechanisms that would ensure they obtained the content desired. Groups in particular were sources of desired information:"On the groups I’ll post something because it’s a diabetes type 2 group and I’m sure that somebody is going through the same thing or been through it, and they’re going to tell me something that may help me out."90, F, Declined to answer race, 30-49Obtaining the health information or feedback desired was also achieved using Facebook mechanisms with the ability to target participants’ messages to certain social network members:"Again, it’s situational. I don’t think everybody needs to know everything, so I target my message to who I think is interested or who I’ll get sympathy from. I can’t put something out there and have everybody go, “Poor baby, suck it up!” I want people to go, “Aww, it’s okay. It’ll be okay."33, F, White, 50-64Similarly, participants sought to avoid unwanted input and information by refraining from using certain Facebook mechanisms. One participant knew that if he posted his poor A1C level to his timeline he would:"...get scolded by one friend who’s an eye doctor."226, M, White, 50-64Participants noted that some Facebook mechanisms facilitated their ability to provide instrumental and emotional support. One participant felt that by using the “share” mechanism to post diabetes-related information:"someone else can read it, and can learn from it, and not feel that they’re in the daily management of diabetes by themselves."173, F, Black or African American, 30-49Participants also stressed commenting on posts as a form of providing emotional support.Wanting or not wanting to address others’ inquiries, interests, and/or requests influenced participants’ choice of Facebook mechanism. In many cases, participants were comfortable responding to social network members’ questions using the mechanism by which the question was asked:"If someone asks me about it, if someone from one of the groups or something or the pages asks me about it, I would probably communicate through that, in that way."120, F, White, 50-64However, other participants expressed situations in which other considerations outweighed their desire to respond to inquiries from their social network:"Right now, I have an issue with my kidneys…I’m not posting that. It’s probably related to diabetes, but I don’t know. If it’s something that opens myself up to a bunch of questions, I don’t post it."173, F, Black or African American, 30-49Participants’ choice of Facebook communication mechanism reflected characteristics of specific Facebook mechanisms.Participants considered the reliability of social network members receiving health information through a specific Facebook mechanism. For example, due to Facebook’s structure, depending on the time of day a user is logged into the site and/or the popularity of a particular post, certain posts may or may not appear in a user’s newsfeed. Therefore, participants depended on other means of sending a message:"I know with the newsfeed thing, you have most recent and whatever the other one is, most popular, or something. I know that sometimes I could post something on my page, but it doesn’t show up in everyone’s newsfeed. Depending on when they look at Facebook, like it could be at the bottom, and they don’t see it. I will send private message just as confirmation if I wanna make sure that person got the information."173, F, Black or African American, 30-49Facebook is integrated with many external websites through the “share” mechanism. A few participants acknowledged the convenience of using the “share” Facebook mechanism on external websites to post useful health information to their timeline:"They’re convenient to share. Usually it’s from a website with a share button."172, M, Hispanic or Latino, American Indian/Alaskan Native, 30-49The structures of the private message and chat mechanisms on Facebook have the ability to easily facilitate communication with groups of people. Several participants acknowledged that these mechanisms were beneficial when they wanted to send out information to a large number of specific people in a short time:"If something was—I needed to get out to a lot of people in a short period of time and sitting down making 20, 30, 40 phone calls was not something that I could do, then I could use Facebook and those friends and send a private message, because you can send a private message to groups of people, I’m able to do it that way." 114, F, Black or African American, 50-64The results of this study demonstrate the complexity of selecting a mechanism of health information communication on Facebook. Participants considered many factors before making a decision, including their own and the recipient’s characteristics and relationships, the content of the information, the communication purpose, and the attributes of a particular communication mechanism. These findings mirror findings of previous studies documenting patients’ general rationales for communicating health information -15, but Our findings partially support previous literature focused on the use of Facebook groups for health information communication ,35-40. SIn addition to supporting previous literature on the use of Facebook groups for health information communication, our study provided a novel, in-depth explication of how other communication mechanisms on Facebook are used for this purpose. As a whole, participants reported using the full range of available communication mechanisms, spanning those that are private versus public, synchronous versus asynchronous, and active versus passive to meet a range of communication needs. This general finding, that patients use a variety of mechanisms to communicate health information depending on the situation and intended recipient(s), parallels those of other studies of patients’ online and offline health information communication with social network members ,50,51. DThe use of multiple communication mechanisms on Facebook to communicate health information may arise from participants’ need to balance competing priorities. Understanding these balancing acts can provide insight into additional design opportunities for consumer health IT. Patients’ use of both active  and passive  mechanisms reflects their need to variously balance the desire to communicate health information against the effort required . In thisBeyond the design recommendations discussed above, there are likely opportunities to integrate or extend existing functionality within Facebook to better meet patient needs for consumer health IT supporting health information communication. For example, participants in our study indicated that their reaction to social network members’ feedback is dependent on mood. Facebook currently has the capability of allowing users to indicate their mood and to link this mood to a specific post. This type of functionality could be integrated into consumer health IT to allow people to provide their current emotion as related to a piece of information, better enabling them to receive appropriate and supportive feedback. Similarly, our participants stated that their use of certain Facebook mechanisms is motivated by a need to ensure that the social network member will receive the message. Facebook currently informs users if a message was received through the chat or private messaging function (by displaying the word “read”) and through groups (by displaying who has seen the post). This functionality could also be integrated into consumer health IT, along with an additional layer that enables users to visualize the reliability of a social network member receiving a message through a given communication mechanism. As a third example, participants expressed the importance of communicating information that was relevant to themselves and to their social network members. At present, Facebook allows users to control input to their newsfeeds by individual (whose posts are prioritized). To meet the needs of our participants, consumer health IT should enable users to prioritize information received by both user and topic. Moreover, to help users not only receive but also send relevant information, text mining capabilities could be extended to offer suggestions on which social network members should be tagged in a post.This study is subject to several limitations. First, the retrospective interview approach to data collection is subject to respondent recall bias. We attempted to mitigate this bias in the qualitative portion of our study by asking participants to review their Facebook communications prior to engaging in the interview. Second, the study focused only on individuals with one diagnosis , although some reported co-morbidities. It is likely, however, that the results have some generalizability to individuals with other chronic health conditions requiring similar levels of daily engagement. Third, participants in this study all lived in or were residents of the United States. It is possible that individuals living in other countries would approach health information communication on Facebook differently. However, our sample contained cultural diversity in the sense that it purposefully oversampled individuals identifying as racial and ethnic minorities. Finally, it is important to note that understanding communication mechanism use on Facebook is only one of multiple ways of understanding patient needs for consumer health IT focused on supporting health information communication between patients and their social networks. The lessons learned from this study should be combined with other needs assessments within a participatory design process when developing a specific consumer health IT solution.When choosing a mechanism for health information communication, participants consider multiple factors that intersect in complex ways. Factors included what information they intended to share, what they were trying to accomplish, attributes of technology, and attributes and communication practices of their social network. There is a need for consumer health IT communication mechanisms to allow for a range of choices to suit the intersectionality of participants’ rationales. Technology that better meets patients’ needs will lead to better self-management of health conditions, and therefore, improve overall health outcomes. This study demonstrates that this intersectionality leads to a range of preferred communication mechanisms beyond those commonly available within existing consumer health IT solutions. As design of these systems evolve, there is a need to meet demand for a bundle of mechanisms facilitating communication between an individual and multiple types of social networks—communication mechanisms that vary in terms of level of effort, degree of synchronous communication, and privacy control. Future research could include designing consumer health IT solutions that have these specific communication mechanisms and then testing the solution with patients of varying health conditions. Additionally, by describing participants’ rationales, we can infer the underlying dynamics of participants’ choice of communication method. However, this interpretation is at an aggregate level across participants. Data from our interviews do not tell us systematically who is making what type of decisions under what circumstances. Another promising direction for future research will be to build a model of health information communication choices. Analysis of the results from the larger study from which data for this study were drawn will contribute to this research.


To explore three school based transitions and their impact on positive self- reported- health (SRH), pre-school to elementary school (6–10 y), elementary school to junior high school (10-13y), and junior high school to upper secondary school/high school (13-16y), in a long-term longitudinal population based study.The study followed three cohorts through one school transition each.A longitudinal study with data from 6693 Health Dialogue questionnaires were used. Data were collected in the middle of Sweden during 2007–2012 with school children age 6–16 years old.Several significant factors were identified with an impact for a positive self-reported-health among children age 6-16y; not feeling sad or depressed, afraid or worried, positive school environment (schoolyard and restrooms), not bullied, good sleep, daily physical activity and ability to concentrate. There was no single factor identified, the factors differed according to gender and age.The study have identified several gender and age specific factors for successful school transitions relevant for a positive SRH. This is valuable information for school staff, parents and school children and provides a possibility to provide support and assistance when needed.The online version of this article (doi:10.1186/1471-2458-14-1045) contains supplementary material, which is available to authorized users. School children experience several transitions during their progress through the educational system: first from home to preschool, then to elementary, middle and secondary schools, university/college and finally employment. Parallel to these school transitions children undergo natural development process (aging and growth) marked by considerable individual physical, intellectual and emotional change, as well as the socialization processes of learning and adapting to function as part of a group or school class , 2. MeleAdolescents often turn away from their traditional family support and prefer to test their own abilities. Meanwhile the adolescents enter a period of emotional intensity, and will not become cognitively mature until 20–25 y –6. The cth grade school children. It was found that as children reach the peak of one social/school stage they are swiftly presented with an apparently much steeper and more demanding challenge , a non smoking home 2.4;1.0-8.1], feeling comfortable in school [2.2.0-6.9],not feeling afraid or worried , and not experienced friends bullied  and reporting a positive SRH in 4 th grade. An association could also be made between 6 y old girls experiencing the school yard positively , a non smoking home , and positive sleep  and reporting a positive SRH as 10 y old, and among 6 y old boys feeling comfortable in school , 2) ability to concentration , 3) and not feeling sad or blue  and reporting a positive SRH , not experiencing being bullied, having a good sleep, being physical active, having the ability to concentrate .As differences in the key factors were identified between the cohorts, this allows interpretation of how children’s age and development, as well as school organization and the pedagogical curriculum affect SRH.We interpreted that it was vital for children of 6–10 y to have the courage and inner security to experience a larger world, including a partial separating from parents. Furthermore, it is important that the schools physical and mental environment supports the children’s natural curiosity, without damaging the children’s trust.Achieving a good start to school was found to be important for reporting positive SRH for 6 y old children.It seems as if this specific school transition for children 10–13 y bridges over a wider gap. We, therefore, claim that the social belonging is of great importance for these children. The school environment may provide opportunities to engage in interaction with other children, which again fosters feelings of social belonging and enhances pupil’s possibility of good school transition and to report positive SRH as 13 y old.The health of 13-16y olds can be divided into several components such as healthy body, security within oneself and in relation to others. A positive SRH was significantly associated with a broad spectrum of variables reflecting physical, mental and social factors, and can be interpreted as good and robust self esteem being the key factor across positive physical, mental and social factors. Almost all variables had to have a positive outcome in order to report a positive SRH as this reflects a complex process in a sensitive period in children’s lives. This corresponds well with earlier research among adolescents which conceptualize health as a construct related to medical, psychological, social and lifestyle factors. Positive health ratings were affected in a similar manner to negative ratings, however, the absolute importance of hampering positive health may be greater because of the high prevalence of such ratings .These findings identify health factors with a positive impact on SRH during transitions. These factors differed across ages and between genders, and thus contribute to the knowledge of the school nurses and support teams. This knowledge can now be applied to enhance facilitation of school children during school transitions, which will be vital in preventing school failure and dropouts. Other researchers have found that there is no single factor that can account for school dropout; rather it is a slow context dependent process . Our finThe relationship between parental and peers smoking, family structure and parent–child relationship, and adolescent smoking indicate that all of these factors contribute to the onset of daily smoking in adolescents –38. ShenThis study was limited by the fact that all results are limited to three cohorts of Swedish school children; however, as a population based survey including all school children SRH from 6–16 years and the high total response rate (79%) provides considerable strength and increases the generalizability of the results. In all research concerning children it is always difficult to find methods that are valid and reliable and there has been criticism of the HD concept based on the assumption that young children’s self-assessment of their own health is invalid due to the maturity and level of development, and that small children cannot verbalize their own health, and are instead influenced by their parents and surroundings. Riley’s  study deKnowledge that different health factors during school children’s school transitions have impact for future positive self-reported-health, and that these health factors may vary depending on age and gender, adds vital knowledge to the different actors on the school arena.Health questionnaire for 6-,10-,13- and 16- year- olds (4 versions) in pdf.(PDF 852 KB)Additional file 1:The coding of the variables in pdf.(PDF 222 KB)Additional file 2: