Participatory medicine has become a trend with the potential to transform the healthcare industry, say its supporters.
"Healthcare is not a spectator sport," said Danny Sands, a co-founder of the Society of Participatory Medicine, a primary care physician and director of clinical informatics at Cisco.
Having patients take a more active role in their health and form partnerships with their doctors will help mitigate some of the problems in today's healthcare system, Sands said.
The biggest component of changing the culture of healthcare is technologies that connect patients with their doctors, with health information and with other patients.
"The Internet is what's really making a difference," Sands said. Connective technologies lower barriers to patient engagement, he said, and having patients engaged is what will ultimately improve the healthcare system.
The Internet allows patients to research health topics – which can lead to greater understanding of health issues and why treatments are prescribed – join online support groups, where they can exchange experiences and information, and connect with their healthcare providers. Secure portals between healthcare providers and their patients allow for e-prescribing and e-visits and access to personal health records.
"Patients who understand why they're being prescribed a medication are more efficient. If I have to keep bringing you back over and over, it's a cost to the system," Sands said. "It's expensive to bring you to my office – expensive for you and expensive for me. Your time, my time, resource time," he said. "If we move to that less expensive setting – taking care of some issues – you reduce costs, unburden the system and improve satisfaction for all involved."
One of the projects leading the participatory trend charge is PatientsLikeMe, a social networking health data-sharing platform.
The website takes the patient experience with illness and treatments and translates that information into data that can be used and shared by healthcare professionals and patients.
"While it becomes a social environment where they (patients) can actually talk on the forum, the power of it is we're collecting real structured information both about specific diseases and also about the value patients receive in the real world for various interventions," said Benjamin Heywood, a co-founder of the website.
"Our site begins to allow for fundamental measurement of value that then can drive how we allocate resources broadly, from a policy standpoint, or just the system appropriately allocating resources against that value," he said.
Having patients participating in their health is what everyone should aim for, said Cyndy Nayer, president and CEO of the Center for Health Value Innovation. However, she said, if patients are getting their heath information from Facebook or TV and taking that information at face value, there will be problems.
Discernment and collaboration are key to making participatory medicine work, she said.
"We need to be sure where they're getting their information from and how they're sharing that information with the physicians," she said. "It needs to be shared in a collaborative environment."
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