Social networks devoted to specific health conditions offer the potential to improve participants' treatment and adherence to their health regimen, according to two recent studies.
The Veterans Health Administration and University of California-San Francisco have been studying how epilepsy patients use PatientsLikeMe, a network of patients with chronic illnesses. On the site, patient records are de-identified and available to every participant, including researchers and companies focused on improving products, services, and care. Patients using the site can see what works--and what doesn't--for others in the same boat, according to a blog post at Health Affairs.
Among the lessons learned:
- Patients who connect with others patients are better able to stay on track with their health regimen.
- When patients share stories, offer support or critique a poor health decision by another patient, members react differently than if the same information comes from "experts" or their healthcare provider.
- It's imperative that patients and providers develop a common language to describe seizure types and severity so patients understand the implications, providers have the clarity they need to prescribe treatments and researchers can rely on patient-reported information.
Separately, a study from Children's Hospital Boston's Informatics Program found that hypoglycemia--when blood sugar goes too low--might be more common among diabetics than previously reported. The research, published at JAMA Internal Medicine, was based on patients recruited to the social network TuDiabetes.org. Using an application called TuAnalyze that engages members in real time, they asked participants to report the frequency with which they experience episodes of hypoglycemia.
Of the 613 TuAnalyze users who participated in the study, nearly half reported more than four hypoglycemic episodes in the previous two weeks and about 30 percent reported at least one severe episode in the past year. More than half reported experiencing more than one effect, including avoiding exercise, daily debilitating worry and accidents or injuries.
The app also aggregates data and sends it back to users in real time, according to an announcement. The authors reported that participants responded quickly to reports.
"People in the community picked up on the data and started talking about how to better manage their diabetes day to day," lead author Elissa Weitzman said. "With this participatory approach, we're taking a platform developed for a research purpose and turning it into a way to help promote and manage care. … We see the participatory surveillance approach as a new model for public health reporting across conditions and health issues."
Researchers from Brigham and Women's Hospital and Harvard Medical School recently said that social media and online access are providing a "perfect storm" in healthcare in the way patients and organizations connect.
Yet it's still important to consider your audience. Older participants were found to respond better to health information given to them in print, according to a recent study published at Journal of Medical Internet Research.