How Online Communities are Building Better Health

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Connecting patients to others with similar conditions empowers users of online communities to take charge of their health and generates useful data for researchers.

Being a patient can be a daunting experience, particularly when you don’t know what is going on with your body. Finding the right doctor, opting for a second opinion or experimenting with treatments can be a really tough journey to tackle alone, posing significant challenges for many who need medical attention.

However, increasing numbers of people battling illness are using online communities and social networks to find others with similar problems to share treatment advice and emotional support. These relationships can arm patients with a greater depth of information about their own conditions, making patients feel more comfortable and in charge of their own health. When they do seek care, patients are also better equipped to have conversations with their doctors, leading to a more collaborative relationship around their chosen treatment plan.

These networks become valuable resources for doctors and researchers as well, providing them with a platform for observing treatment trends and results across a larger population than they would may normally have access to otherwise. Going one step further, these communities can potentially be organized and analyzed to crowdsource solutions to healthcare problems and public health issues. The emergence of these online communities that are leveling the relationship between doctor and patient is a trend in PSFK’s Future of Health report that we are calling Social Support Communities.

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As social and mobile technologies are now a fact of every day life, it is not surprising that people embrace them for support with their health issues. One in four Internet users living with a chronic ailment say they have gone online to find others with similar health concerns, in contrast to the 15% of Internet users without chronic conditions who have sought such help online, reports Pew Research. Connecting around a chronic condition empowers patients to take charge of their health, and start to find treatments they might have otherwise been unaware of.

Exploring alternatives in healthcare alongside hundreds if not thousands of similarly-afflicted people provides a level of support never before possible, which is changing how people view their illnesses. “I think that ‘social support’ only scratches the surface. I think mobile and peer-to-peer technology can allow us to fundamentally change what it means to be a patient. Living with an incurable condition means you have to become an experimenter – an experimenter in learning what treatments work for you,” says Sean Ahrens, the founder of Crohnology, a a patient-powered research network for Crohn’s and Colitis.

While this can ultimately help to break down barriers between patient and healer, leaving consumers more comfortable to ask questions and take initiative, on a large scale this behavior has tremendous value to researchers and doctors. The data generated from these networks and communities can be measured the same way a large population is analyzed to create databases of collective health intelligence, crowdsourced from thousands of experimenters.

With the increasing numbers of people turning to social and online networks for health advice (42% of consumers have used social media to access health-related consumer reviews, according to PWC), this trend is only set to grow. A few questions to reflect upon include:

  • How can providers connect patients to others with similar conditions? What existing social matchmaking services could be used?
  • What questions can peers and social communities answer to alleviate demand for care from healthcare providers?
  • How can mobile phones be used to help track both good and bad behaviors, and to keep patients accountable for their actions?
  • What tools can be added to these platforms to ensure confidentiality and security around shared data?
  • How can these platforms further act as a resource for the healthcare community?
  • How can insurance companies connect with communities to offer incentives that reduce the overall number of doctor visits?

Originally published on Psfk

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