As more and more patients take very active roles in their healthcare and decision-making, many are becoming experts in their disease and condition diagnoses, sometimes even more so than the professionals who are paid to provide their medical care. One of the ways they develop their expanded expertise is through patient communities.
As their name implies, patient communities are comprised of patients and caregivers who find each other online, compare notes, help each other, and increase their own knowledge of everything from their symptoms, to their treatment options, to resources, to their experiences with the medical system, and more. Some participants have become apomediaries -- that is, peers who have become experts. Most patient communities are centered on chronic, genetic, rare or terminal diseases or conditions; those that challenge quality and quantity of life over a period of time.
Some sharing takes place through blogs, where patients share their experiences, then entertain comments and questions from others who have something to say or ask about those blog posts.
But most of the exchange takes place using social media tools like Twitter, Google+ or Facebook. These "conversations" may take place within a loosely bound, informal group that conducts a conversation publicly on Twitter. Or it may be a far more cohesive, invested group that shares not only attitudes, opinions and knowledge, but even DNA test results and medical records.
Some groups take advantage of "crowdsourcing," which relies on the input from groups of people to find answers to questions, instead of looking to one knowledgeable expert or consultant for an answer.
Who Benefits from Patient Communities?
• Patients who want to know more about their health concerns.
Empowered patients who want to garner or share ideas for everything from choosing the right doctor to alternative diagnoses to fighting medical bills and claims may find a more general, public forum to discuss their concerns. These conversations often take place through online support groups and message boards, or general social media sites.
• Patients with rare diseases and conditions.
The very nature of rare diseases is that there may not be (nor never have been) enough people who have been diagnosed with them to create any large body of information -- at least, not enough critical mass to be definitive or decisive. When patients and their caregivers begin working together, they can sometimes create that collective wisdom to help themselves, and to help their doctors treat them.
These rare disease patient communities may even include researchers, doctors and other professionals. They are looking to broaden the scope of knowledge about the disease or condition for everyone, not just help an individual patient. As the professionals interact with a group of patients with the same diagnosis or similar symptoms, medical discovery can take place. Answers may be found. New diagnostic tests or treatments may result.
If you have a rare disease or a condition that does not have a huge body of knowledge associated with it, and you are interested in sharing not just attitudes, opinions and experiences, but maybe your medical records, too, you'll want to take a look at websites like:
• PatientsLikeMe (500+ diseases and conditions)
• ACOR (Association of Cancer Online Resources - cancer, especially lesser known cancers)
• Inspire.com's Rare Diseases community
• Patients interested in their family heritage and genetic influences.
As we continue our move toward more personalized medicine, organizations are making it possible for patients to share what they know about their genetic makeup and medical conditions as a way of determining the influence of their DNA on their likelihood of developing certain medical conditions.
Most require DNA testing to join, then connect you to others with similar genetic histories who are, therefore, probably related to you.
If you want to further your understanding of your genetic makeup and its influence on your health, check out:
• 23 and Me (We all have 23 pairs of chromosomes)
Advice for Participation in Patient Communities
In some of these communities, people are asked to share very intimate details about their health. The best advice, then, is focused on keeping you safe online.
Most of these patient communities are built to help patients benefit individually, and to contribute to the greater good. But not all participants are interested in benefiting any more than their bottom line. Sometimes you'll find a group has been, in effect, infiltrated by someone who hopes to gather information for less-than-savory purposes. An example would be a representative from a pharmaceutical companywho might diss its competition, or talk up its own drug. Or you might find an insurance company employee who might want to use the information they find to deny care or services. (Follow the Money) While such uses may be unscrupulous, or even illegal (see GINA laws), that doesn't stop them from happening.
With those caveats in mind, here are some ways you can participate in patient communities, but stay safe, too:
- Remember that once information is put online, it stays there. Even if you remove it or delete it, it is still archived, and if someone wants access, they can get it.
- Remember that no matter how secure the website host claims your information is -- it's only as secure as the guy who decides to break into it. Think about all the social security numbers that have been stolen. We read about them in the news all the time. That can happen to your information, too.
- If you do want to share information -- whether it's for the greater good or not -- then make sure you don't give so much information that you can be identified as an individual. Give yourself an alternative name, or use only your first name and not your last, and set up a separate email account with that same info so your usual email address can't be tied to you. Don't share your address, or even the area you live in.
- Don't confuse these "greater good" sites with personal health records (PHRs), storage sites intended to house your medical records. Storage has nothing to do with the greater good.
