Sharing access might increase engagementBMJ 2010; 341 doi: http://dx.doi.org/10.1136/bmj.c7209 (Published 20 December 2010) Cite this as: BMJ 2010;341:c7209
Greenhalgh and colleagues report that HealthSpace fails to engage patients.1 At PatientsLikeMe we sought to maximise engagement by first building online communities for patients without effective treatments (for example, patients with amyotrophic lateral sclerosis), where symptoms are complex and quality of life is impaired (for example, multiple sclerosis), and where patients don’t know other patients with their condition (for example, epilepsy). All our data are patient reported, and this has advantages and disadvantages. In its favour, creating patient reported outcomes and disease specific tools demonstrates value to patients in their first contact with the system. There is no need to interface with a multitude of IT systems, negotiate variable policies and permissions, or adhere to US regulations for protecting health specific data. Disadvantages include uncertainty over quality of diagnosis, uneven levels of participation, and less ability to capture objective values (for example, service use).
Patients may expect greater levels of connectivity as a result of social sharing tools, such as Facebook; users of PatientsLikeMe identify several benefits of sharing their health data with others.2 Conversely, systems like HealthSpace enable users to see their own information only, which is not particularly informative or engaging. We strongly agree that “agile redesign in response to user feedback” is necessary.1 A successful health information system should be like the human body itself, constantly renewing its cells, organs, and systems to maintain vitality.
Cite this as: BMJ 2010;341:c7209
Competing interests: PW is a paid employee of PatientsLikeMe and owns stock options in the company. PatientsLikeMe’s research and development team has received funding from Avanir, Novartis, and UCB.
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