Carol S. Bond

Ethical Issues of Social Media Usage in Healthcare

OBJECTIVE Social media, web and mobile technologies are increasingly used in healthcare and directly support patientcentered care. Patients benefit from disease self-management tools, contact to others, and closer monitoring. Researchers study drug efficiency, or recruit patients for clinical studies via these technologies. However, low communication barriers in socialmedia, limited privacy and security issues lead to problems from an ethical perspective. This paper summarizes the ethical issues to be considered when social media is exploited in healthcare contexts. METHODS Starting from our experiences in social-media research, we collected ethical issues for selected social-media use cases in the context of patient-centered care. Results were enriched by collecting and analyzing relevant literature and were discussed and interpreted by members of the IMIA Social Media Working Group. RESULTS Most relevant issues in social-media applications are confidence and privacy that need to be carefully preserved. The patient-physician relationship can suffer from the new information gain on both sides since private information of both healthcare provider and consumer may be accessible through the Internet. Physicians need to ensure they keep the borders between private and professional intact. Beyond, preserving patient anonymity when citing Internet content is crucial for research studies. CONCLUSION Exploiting medical social-media in healthcare applications requires a careful reflection of roles and responsibilities. Availability of data and information can be useful in many settings, but the abuse of data needs to be prevented. Preserving privacy and confidentiality of online users is a main issue, as well as providing means for patients or Internet users to express concerns on data usage.

The conceptual and practical ethical dilemmas of using health discussion board posts as research data.

Background Increasing numbers of people living with a long-term health condition are putting personal health information online, including on discussion boards. Many discussion boards contain material of potential use to researchers; however, it is unclear how this information can and should be used by researchers. To date there has been no evaluation of the views of those individuals sharing health information online regarding the use of their shared information for research purposes. Objective To explore the views of contributors to online diabetes discussion boards with regards to if (and how) they feel their contributions to boards should be used by health researchers. Methods A qualitative approach was employed using online semistructured asynchronous (email) interviews. Interpretative description methodology was used to assess the interview transcripts, and quotations were extracted and anonymized to support each theme. Results 26 interviews were carried out. Participants agreed that forum posts are in the public domain and that aggregated information could be freely used by researchers. This was agreed to be a good way of ensuring that the view of people living with diabetes is being heard in research. There was no consensus on the need for permission to use individual information, such as quotations, with some people happy for this to be freely used and others feeling that permission is necessary. Conclusions Participants acknowledged the dichotomy of having placed information into the public domain in an unrestricted way, with some interviewees also wanting to retain control of its use. The Internet is a new research location, and rather than trying to apply traditional ethical norms to this new genre, a new modus operandi is required. The authors propose introducing new norms for presenting research carried out with online discussion boards.

What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards

Background People with long-term conditions are encouraged to take control and ownership of managing their condition. Interactions between health care staff and patients become partnerships with sharing of expertise. This has changed the doctor-patient relationship and the division of roles and responsibilities that traditionally existed, but what each party expects from the other may not always be clear. Information that people with long-term conditions share on Internet discussion boards can provide useful insights into their expectations of health care staff. This paper reports on a small study about the expectations that people with a long-term condition (diabetes) have of their doctors using information gleaned from Internet discussion boards. Objective The aim of this study was to ascertain what people with diabetes who use Internet discussion forums want from their doctors. The study objectives were to identify what people with diabetes (1) consider their role in condition management, (2) consider their doctor’s role in managing their condition, (3) see as positive elements of their interactions with medical staff, and (4) find problematic in their interactions with medical staff. Methods The study used qualitative methodology to explore the experiences, views, and perceptions of individuals participating on 4 Internet message boards. Posts made on the discussion boards were analyzed using the principles of qualitative content analysis. The meanings of sections of data were noted using codes that were developed inductively; those with similar codes were merged into subcategories and related subcategories were combined to form categories. Results The key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors. Conclusions People with diabetes valued doctors who showed respect for them and their knowledge, and were willing to listen and openly discuss their options. Patients felt that they could and should take responsibility for and control of their day-to-day disease management. They saw doctors as having a role in this process, but when this was lacking, many people felt able to use alternative means to achieve their goal, although the doctor’s function in terms of gatekeeping resources could create difficulties for them in this respect.

Prescription for nursing informatics in pre-registration nurse education

Nurses need to be able to use information and communications technology not only to support their own practice, but also to help their patients make best use of it. This article argues that nurses are not currently adequately prepared to work with information and technology through their pre-registration education. Reflecting the lack of nursing informatics expertise, it is recommended that all pre-registration nursing programmes should have access to a nursing informatics specialist. A prescription to meet the informatics needs of the newly qualified nurse is proposed. This places the areas that need to be included in pre-registration education into broad groups that both articulate the competencies that nurses need to develop, and indicate why they are needed, rather than providing context-free checklists of skills. This is presented as a binary scatter chart with two axes, skill to knowledge and technology to information.

An Innovative Mixed Methods Approach to Studying the Online Health Information Seeking Experiences of Adults with Chronic Health Conditions.

This article presents an innovative sequential mixed methods approach to researching the experiences of U.K. adults with chronic health conditions seeking health information online. The use of multiple methods integrated within a single study ensured that the focus of the research was emergent and relevant and ultimately provided a more complete picture of the experience of online health information seeking through joint discussion. This was achieved by communicating both breadth and depth of data relating to the phenomenon. Findings indicate that if the study had used a single research method in isolation, something would have been lost or misunderstood regarding the phenomenon, thus demonstrating the value of each stage within the research design and of the integration of these findings.

Can I help you? Information sharing in online discussion forums by people living with a long-term condition

Background Peer-to-peer health care is increasing, especially amongst people living with a long-term condition. How information is shared is, however, sometimes of concern to health care professionals. Objective This study explored what information is being shared on health-related discussion boards and identified the approaches people used to signpost their peers to information. Methods This study was conducted using a qualitative content analysis methodology to explore information shared on discussion boards for people living with diabetes. Whilst there is debate about the best ethical lens to view research carried out on data posted on online discussion boards, the researchers chose to adopt the stance of treating this type of information as “personal health text”, a specific type of research data in its own right. Results Qualitative content analysis and basic descriptive statistics were used to analyse the selected posts. Two major themes were identified: ‘Information Sharing from Experience’ and ‘Signposting Other Sources of Information’. Conclusions People were actively engaging in information sharing in online discussion forums, mainly through direct signposting. The quality of the information shared was important, with reasons for recommendations being given. Much of the information sharing was based on experience, which also brought in information from external sources such as health care professionals and other acknowledged experts in the field. With the rise in peer-to-peer support networks, the nature of health knowledge and expertise needs to be redefined. People online are combining external information with their own personal experiences and sharing that for others to take and develop as they wish.

Living with a long-term condition: Understanding well-being for individuals with thrombophilia or asthma

A range of literature has explored the experience of living with a long-term condition (LTC), and frequently treats such experiences and conditions as problematic. In contrast, other research has demonstrated that it may be possible to adapt and achieve well-being, even when living with such a condition. This tends to focus on meaning and the qualitative experience of living with an LTC, and offers alternative perspectives, often of the same or similar conditions. As a result of these conflicting views, this study chose to consider two conditions which, though they may lead to life-threatening illness on occasion, do not appear to impact significantly the lives of all those affected on a daily basis. The aim of this research was to explore and explain how people make sense of two long-term, potentially life-threatening health conditions, namely, thrombophilia and asthma. In doing so, it specifically considered the contribution made by information about the condition. A constructivist grounded theory approach was adopted; this enabled the generation of a theory regarding how people make sense of their LTC, whilst acknowledging the social circumstances in which this was situated. Semi-structured interviews were conducted with 16 participants who had given consent to take part in the research. The findings demonstrate that participants undergo a two-stage process—gaining knowledge and living with a long-term condition. The theory based on these findings indicates that those who are knowledgeable about their condition, making informed decisions in relation to it, and accept their condition are able to live with it, whilst those who do not accept their condition do not fully adapt to it or integrate it into their lives.A range of literature has explored the experience of living with a long-term condition (LTC), and frequently treats such experiences and conditions as problematic. In contrast, other research has demonstrated that it may be possible to adapt and achieve well-being, even when living with such a condition. This tends to focus on meaning and the qualitative experience of living with an LTC, and offers alternative perspectives, often of the same or similar conditions. As a result of these conflicting views, this study chose to consider two conditions which, though they may lead to life-threatening illness on occasion, do not appear to impact significantly the lives of all those affected on a daily basis. The aim of this research was to explore and explain how people make sense of two long-term, potentially life-threatening health conditions, namely, thrombophilia and asthma. In doing so, it specifically considered the contribution made by information about the condition. A constructivist grounded theory approach was adopted; this enabled the generation of a theory regarding how people make sense of their LTC, whilst acknowledging the social circumstances in which this was situated. Semi-structured interviews were conducted with 16 participants who had given consent to take part in the research. The findings demonstrate that participants undergo a two-stage process-gaining knowledge and living with a long-term condition. The theory based on these findings indicates that those who are knowledgeable about their condition, making informed decisions in relation to it, and accept their condition are able to live with it, whilst those who do not accept their condition do not fully adapt to it or integrate it into their lives.

Innovation in Health Informatics: much is underpinned by eHealth and better information for patients.

Health informatics is a relatively young discipline, bringing together professionals with a range of backgrounds, including management professionals, computer specialists and health care professionals. A lot of focus has been on developing systems such as medical records and information sharing, and it also has the potential to span the boundaries between health care professionals and patients. This is especially true for people living with a long-term condition.

Implications for research methods when conducting studies with the users of online health communities.

Online communities are present for almost every health condition, with these online spaces allowing people to connect with each other. Increasingly, health researchers are exploring these communities in order to study the rich information contained on these Web sites and to observe how people are using these communities. This article was created as a consequence of the research team’s experiences with conducting e-mail interviews with users of online diabetes communities. A fuller report of the research and findings is available, while this article explores the challenges and successes that we experienced as researchers.

Healthcare Utopia or Dystopia

The Autumn edition of BCS’s magazine for the IT professional, ITNOW,[1][1] included a health anecdote as part of its Making IT Good for Society theme. The story ([Box 1][2]) was about Dave and his health. ### Technology to deliver this care is available now The technological elements Dave needs