With the GOP’s push to remake health care, Americans are beginning to accept the idea that the system we use to access care and insure ourselves against catastrophe will be in flux for years to come. A sense of crisis will persist, as Washington picks winners (tax breaks for the wealthy?) and losers (people with pre-existing conditions?). But within the crisis lies opportunity for creative people who want something better. The best platform for taking advantage of this opportunity may be found in the vast power of online communities.
Decades of work in the field, as a nurse and health communication expert, have shown me that people crave accurate information, support from others who have lived with similar challenges, and guidance in making decisions. When it comes to communication, clinicians, institutions, and the media has a tremendous opportunity at the exact moment when the need for accurate information has never been greater.
The healthcare communication crisis has been caused by the collision of 2 competing forces. On one side, is a torrent of information generated by new science and technology that are increasing treatment options at an explosive rate. In oncology alone, professional journals are labs reporting on new immunotherapies almost every month. At the same time, however, caregivers have less time to talk with patients about their options, or even provide solid advice on staying well, as insurers press them to increase their efficiencies.
Not surprisingly, people have been trying to fix this problem themselves. More than 70 million people belong to health-related groups on Facebook, and research shows that 80 percent of social media users use time online to seek health information. Unfortunately what people find when they go on line is a hodgepodge of good and bad information presented in with little context, and as if every source should be regarded with equal merit.
It may be alright, in some settings, to treat every opinion as equal, but when it comes to health, this pose doesn’t work. If you think fake news is a problem in politics, consider what can happen when a sick person acts on erroneous notions related to their own illness, or the symptoms they see in a loved one. Immunizations represent the classic example here. Those who say that vaccines cause autism can cite no real scientific evidence, but they nevertheless hold sway over some parents who risk their kids’ lives when they decide to not get them inoculated against deadly diseases.
The beginnings of an answer to the communication gap can be seen in online forums where new parents share advice and support on parenting and child health. Health-community sites like TheMighty.com and Patientslikeme.com give people places to tell their stories of coping with illness and share their experiences. However, no one has connected community, education, and commerce in a way that exploits the full potential of technology.
A great opportunity, one that represents the chance to profit by offering a service, lies in creating online health communities, and populating them each with both experts and seasoned lay people. The true experts may be doctors, nurses, therapists, and other practitioners. Many lay experts—they might be called “medical communicators”—already populate online communities, sharing what they have learned through direct experience and their own research. Their expertise could be certified through education and examinations, and they could stay current in their areas with study supported by healthcare sites.
While peers and experts could provide the initial “output” for these networks, the data that is already circulating online represents a valuable flow of “input” that is currently being wasted. The big players in internet search and social media already know how to recognize that someone is struggling with a health problem based on their online activity. Certain words, phrases, and even images posted on social media are red flags for people heading for a mental health crisis. Similarly, symptoms typed into a search engine can indicate when someone may already have a physical health problem.
With so much data available, and so many people hungry for help, the tech world has a chance to make a big, low-cost contribution by empowering us to take better care of ourselves. Internet companies and existing healthcare providers would be the best ones to step into this role, but they must recognize that consumers want more than to be just fed information. Most of us prefer a conversation to a lecture, and we feel more confident acting on a recommendation when we have had a chance to ask questions and get to know the person offering advice. If this happens to be someone who has lived through what we are experiencing, our confidence rises even higher.
Imagine Amazon pairing with great medical centers to create health-communication communities that deliver information and peer-to-peer support along with products people need. What if more online media teamed-up with the big foundations devoted to cancer, heart disease, and mental health in order to power up the health conversation? Wouldn’t you be more likely to buy from an online drug store that also offers you contact with a community that shares your health interests?
If, as it seems, healthcare is going to remain a marketplace where we are as much consumers as patients (and Washington is signaling that it is), then we must be empowered through data and communication. A huge, underserved marketplace waits for those who are ready to enter it, and we would all be the better for it.