Online support groups: an overlooked resource for patients

Online support groups: history, research, and source

Motivations for contributing to health-related articles on Wikipedia: An interview study

Background: Wikipedia is one of the most accessed sources of health information online. The current English-language Wikipedia contains more than 28,000 articles pertaining to health. Objective: The aim was to characterize individuals’ motivations for contributing to health content on the English-language Wikipedia. Methods: A set of health-related articles were randomly selected and recent contributors invited to complete an online questionnaire and follow-up interview (by Skype, by email, or face-to-face). Interviews were transcribed and analyzed using thematic analysis and a realist grounded theory approach. Results: A total of 32 Wikipedians (31 men) completed the questionnaire and 17 were interviewed. Those completing the questionnaire had a mean age of 39 (range 12-59), 16 had a postgraduate qualification, 10 had or were currently studying for an undergraduate qualification, 3 had no more than secondary education, and 3 were still in secondary education. In all, 15 were currently working in a health-related field (primarily clinicians). The median period for which they have been an active editing Wikipedia was 3-5 years. Of this group, 12 were in the United States, 6 were in the United Kingdom, 4 were in Canada, and the remainder from another 8 countries. Two-thirds spoke more than 1 language and 90% (29/32) were also active contributors in domains other than health. Wikipedians in this study were identified as health professionals, professionals with specific health interests, students, and individuals with health problems. Based on the interviews, their motivations for editing health-related content were summarized in 5 strongly interrelated categories: education (learning about subjects by editing articles), help (wanting to improve and maintain Wikipedia), responsibility (responsibility, often a professional responsibility, to provide good quality health information to readers), fulfillment (editing Wikipedia as a fun, relaxing, engaging, and rewarding activity), and positive attitude to Wikipedia (belief in the value of Wikipedia). An additional factor, hostility (from other contributors), was identified that negatively affected Wikipedians’ motivations. Conclusions: Contributions to Wikipedia’s health-related content in this study were made by both health specialists and laypeople of varying editorial skills. Their motivations for contributing stem from an inherent drive based on values, standards, and beliefs. It became apparent that the community who most actively monitor and edit health-related articles is very small. Although some contributors correspond to a model of “knowledge philanthropists,” others were importantly focused on maintaining articles (improving spelling and grammar, organization, and handling vandalism). There is a need for more people to be involved in Wikipedia’s health-related content

Digital transformation in government: Lessons for digital health?

Globally, there is a movement for outstanding digital services in government; in many countries, this extends to healthcare. And if digital health is to be delivered at scale, there needs to be involvement from multiple stakeholders, and government often has a central role. Understanding how governments are planning digital transformation generally, and in healthcare in particular, is important for other stakeholders. First, achieving sustainable change at scale will often involve working with government. Second, how governments are approaching these challenges can provide useful lessons for others in the field. In this paper, we describe some common trends in digital transformation in government and how they apply to the health sector, using NHS England as a leading exemplar. People expect their government transactions, like renewing a passport online or paying tax, to deliver the same calibre of service as they receive from online banking or online shopping. The processes by which successful corporations have transitioned towards digital maturity are being replicated in the public sector. The extent of governments’ adoption of contemporary product development methodologies can be seen when books such as that of Eric Reis, The lean startup,1 are found on the desks of senior leaders. The goal of digital transformation for companies is clear: save money by making digital services so good that people simply prefer to use them. Amazon and Netflix did not need to train people to use their service – they created a superior service that actively responded to the needs of users in a dynamic way, with an intuitive layout. These services became the de facto way of doing business; this is digital by default. However, digital governance and ownership is in its infancy in many organisations, both in the private and public sector. The transition to a mature digital governance model within a longstanding organisation is a complex and disruptive journey. It can be challenging when organisations conceptualise digital transformation as a clearly defined change management exercise, rather than a fundamental shift in how the organisation as a whole functions. Many organisations erroneously view digital transformation as primarily about the implementation of IT systems, rather than as a new of way working facilitated by advancements in technology, a mistake often seen in healthcare too.2,

Meta-narrative review

Over the past 20 or so years, methods for reviewing the research literature have undergone a transformation. There are now many different methods with a sometimes bewildering range of names. This session will present some of the main approaches to systematic reviewing and aim to stimulate discussion about the power and potential of each method in different situations. The following presenters will introduce their specified method before opening the session up for discussion. Professor Steve Higgins: meta-analysis Dr Geoff Wong: realist review Dr Henry Potts: meta narrative review Dr James Thomas: qualitative synthesi

Performance of EQ-5D, howRu and Oxford hip & knee scores in assessing the outcome of hip and knee replacements

BACKGROUND: We aimed to compare the performance of EQ-5D-3 L and howRu, which are short generic patient-reported outcome measures (PROMs), in assessing the outcome of hip and knee replacements, using the Oxford Hip Score (OHS) and the Oxford Knee Scores (OKS) for comparison. METHODS: Outcome was assessed as the difference between pre-surgery and 6-month post-surgery scores. We used a large sample from the NHS PROMs database, which used EQ-5D-3 L, and a small cohort of patients having the same operations collected by MyClinicalOutcomes (MCO), which used howRu. Both cohorts completed the OHS (hips) or the OKS (knees). RESULTS: The change (outcome) between pre-op and post-op scores as measured by howRu was greater than that measured by EQ-5D, relative to that measured by OHS or OKS. For hip replacements, the correlation for change measured by howRu and OHS was r = 0.77 (0.66–0.85). The corresponding correlation for change measured by EQ-5D Index and OHS was r = 0.64 (0.63–0.64). For knee replacements the correlation between change in howRu and OKS was r = 0.86 (0.75–0.92); between EQ-5D Index and OKS r = 0.59 (0.58–0.60). CONCLUSION: For hip and knee replacement, the outcome measured by howRu was more highly correlated with that measured by the condition-specific Oxford Hip and Knee Scores than were EQ-5D Index or EQ-VAS. The magnitude of change before and after surgery was also greater