(Listen here to the PatientsLikeMeOnCallTM podcast on this topic)
Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct from our users how they were using the site and whether the information they’d learned was helping to influence their interactions with healthcare providers, their decision-making, and ultimately their outcomes. Because JMIR is an open-access journal, you can download the whole paper for free here, but here are some of the highlights from the 1,323 patients that completed the survey:
- Almost all of our patients (94%, N=1,249) were diagnosed when they joined the site; an important factor in joining a community of “patients like me”
- The majority of members (72%, N=952) agreed that the site was helpful for learning about a symptom they have experienced (check out our symptom reports to see what they’re learning!)
- Many respondents (57%, N=757) agreed that the site had helped them to understand side effects of their treatments (check out our treatment reports to find out more!) and 42% (N=559) found the site helpful in finding another patient with experience of taking a specific treatment for their condition
- Patients who used the site more perceived more benefits. We gave each patient an “engagement score” from 0-4 based on how many features of the site they’d used; we found that the higher the participation, the higher the benefit. Correlation doesn’t necessarily mean causation though, so it could be patients who share more get more out of it, or it could be that patients who have already benefited from the site are more willing to participate. Interesting hypothesis for a follow-up perhaps?
- Nearly a third of patients (29%, N=388) had printed out their profiles and shared them with their doctor; two thirds of users (66%, N=871) said their healthcare team were supportive of them using the site. More controversially, we were interested to find that overall, 12% (N=151) said they had changed their physician as a direct result of information received from PatientsLikeMe; that number was twice as high in fibromyalgia (21%)!
- In the spirit of openness we also made available (in de-identified form) all of the open comments we received at the end of the survey on how we could improve the site, both positive and negative.
This was the first study to quantify the potential benefits that users of the site can experience; we hope to discover more about how these change over time and what benefits are perceived by users of our newer communities such as epilepsy and organ transplants.