Do online communities change power processes in healthcare? Using case studies to examine the use of online health communities by patients with Parkinson's disease

Abstract

ObjectiveCommunication technologies, such as personal online health communities, are increasingly considered as a tool to realise patient empowerment. However, little is known about the actual use of online health communities. Here, we investigated if and how patients' use of online communities supports patient empowerment.SettingA network of primary and secondary care providers around individual patients with Parkinson's disease.ParticipantsWe conducted case studies to examine our research question. We interviewed 18 patients with Parkinson's disease and observed the use of online health communities of 14 of them for an average of 1 year.Primary outcome measuresWe analysed the interviews and the online conversations between patients and healthcare providers, using Foucault's framework for studying power processes.ResultsWe observed that patient empowerment is inhibited by implicit norms that exist within these communities around the number and content of postings. First, patients refrained from asking too many questions of their healthcare providers, but felt obliged to offer them regular updates. Second, patients scrutinised the content of their postings, being afraid to come across as complainers. Third, patients were cautious in making knowledge claims about their disease.ConclusionsChanging implicit norms within online communities and the societal context they exist in seems necessary to achieve greater patient empowerment. Possibilities for changing these norms might lie in open dialogue between patient and healthcare providers about expectations, revising the curriculum of medical education and redesigning personal online health communities to support two-way knowledge exchange.

Personal Health Records in Maternity care “a process evaluation”

“…However, this was not a result from the log data and the experiences of users. A recent study confirms our results, showing that patients refrained from asking too many questions and were cautious in making knowledge claims about their disease in a PHR [20]. Professionals mentioned that they, only during the study, realised this tool is disruptive and it requires new processes of care, leading to other roles and attitudes of, and communication between patients and professionals.…”

“…Specifically, pregnant women thought MyPregn@ncy had only added value when there were 'problems' in pregnancy or when they were not satisfied with the current communication with the professionals. Previous studies mainly focused on PHRs used by chronicle ill patients [6,20]. Because pregnancy and childbirth are life events more than diseases, the value of a PHR may be different for pregnant women.…”

“…More extensive discussion about the changing norms could possibly have incorporated higher support of the professionals. The behaviour of patients depending on traditional norms was explored before stating that the expected value of a PHR is hindered by traditional norms about patient-professional interactions [20]. These results call for more commitment to professionals and patients to get used with the possibilities and the method/use?…”

The Limits of Empowerment: How to Reframe the Role of mHealth Tools in the Healthcare Ecosystem

“…14 This is because mHealth tools do not operate in a vacuum. They are used by people embedded in larger social structures (Visser et al 2016) that can considerably hinder or enhance their ability (McAuliff et al 2014) to meet the established standards. This supports Owens and Cribb's (2017) assertion that there is reason to be highly sceptical about the claims that mHealth tools offer people genuine opportunities to improve their health.…”

Use and effects of patient online access to medical records in general practice through a personal health record in the Netherlands. A protocol for a mixed methods study. (Preprint)

“…However, we may be able to assess changes in the endpoints patient satisfaction and number and type of contacts with GPs or practice nurses. We assume socio-demographic factors age, gender, level of education, ethnicity together with health status, health literacy and ideas about roles of patients and HCPs and HCPs' attitudes towards patient involvement moderators for uptake and effects [7,[29][30][31]. …”