When people have questions, problems, and issues related to health conditions they generally turn to friends, colleagues, neighbors or to online communities where they can find sympathetic listeners and information resources to address their concerns. These health social networks bring together people with shared interests to interact, answer questions and just be there to support one another.
A key value of health social networks is that they are patient driven. They supplement and extend traditional health delivery systems that we are all accustomed to. They are composed of a community of individuals who share information, symptoms, and treatments, by leveraging the collective experiences of the group.
As a result, patients who go to social network sites become empowered and engaged, even as they find comfort and solace. I recently joined a breast cancer social network, My Breast Cancer Team (MYBCTTeam) where I have been able to get informative details about the after effects of radiation therapy and the potential side effects of tamoxifen, directly from the personal experience of several individuals. This is not the same as checking studies or talking with my oncologist,who I totally respect and trust.
A survey of 1,060 U.S. adults by the PsC Health Research Institute found that a third of the respondents are gravitating to social networks for health care discussions. Their attraction is that they believe this is a good way to manage their health.
On health social networks, patients can access services ranging from basic emotional support that comes from talking to individuals who are going through similar issues,to helpful information about procedures, treatment choices, medications and side effects. This information usually is vetted by credible physicians who join these networks and are willing to answer questions. Some social networks also offer tools for monitoring and managing chronic conditions. Others provide cutting edge information on results of clinical trials that may be a last resort.
A list of the most popular social networks for health care includes:
Patients Like Me: a community that enables people to share information and data on treatment, medications, and outcomes so that they can make choices based on real-world experiences of other patients with similar issues. Patients Like Me has grown to over 167,500 patients and more than 1,000 conditions.
Inspire: a high engagement peer-to-peer network with many communities of individuals who discuss a variety of issues around diseases. Inspire includes over 275,000 total members, over 50,000 of whom have various types of cancer. These individuals post their thoughts and answer the questions that their peers raise about their disease.
Daily Strength: a comprehensive health network of people who share advice, treatment experiences and support with over 500 individual support groups. Daily Strength offers research on the latest drugs and treatments as well as alternative medicine. This site includes advice, articles, from medical professionals and health experts.
MyFamilyHealth: a social community that allows patients to connect with their relatives and family members to record and track their family health history.
Revolution Health: an online health and medical information and networking site that offers tools aimed at helping individuals by urging them to ask questions and answer other users’ questions, rate their doctors, participate in online discussions and personally contribute content. The site also has a number of tools(apps) to help people become healthier.
Some tips and guidelines for using social networks to assist you with health issues:
Do not believe everything you read on a social network. Be aware that these sites are not monitored or regulated and are only as valuable as the correctness of the opinions expressed. As a result you should always verify information with your own providers before implementing suggestions or ideas that you pick up.
Determine what you want to get from a social network.
Learn how to navigate the site so you can seek out specific people who will be most helpful to you.
Selectively participate in the conversations and share information so that others will share with you. Only reveal what you are comfortable discussing.
Do not get bogged down with too many social networks. Choose the one that is most relevant for your specific health situation.
I am both excited and fearful by the Internet Explosion of shared information. The directives listed above indicate that one should be wary of unsubstantiated information or unproven treatment methods.
The problem is that a layman often has no means to distinguish between good and bad information. Even if, as the website’s founder suggests, one may “trust my doctor completely”, conflicting data and miraculous recoveries can open the door to MIS or even DIS trust.
Peter Kennedy, M.S. M.D.
Dr. Kennedy, what you say is true to a point. Many people do not read to the end and even find sources that are reliable and trust worthy. Much of the transparency is lost behind dollars that many of us cannot afford to pay to find excellent information.
Some medical professional organizations could go a long way to help the situation, but won’t. Example – the American Association of Clinical Endocrinologists – they have two pages or more for reliable information, but do not maintain ready links on their home page for helping patients find them. http://diabetesnavigator.aace.com/type-2-diabetes-resources.php is one such example. It was posted Sept 2011 and has not been added to since. This could be an excellent source of reliable information if they could walk the walk and do what is right for the patient.
Another source of reliable information could be gathered by the doctors or their staff (yes – requires some looking) and used as handouts to patients. It this done – not by any doctor I know – save one, I am a retired patient and in my research of diabetes, I have seen a lot of poor (“cure”) sites that are not worth reading, but it took me some time and research to find reliable sites. If doctors were not so afraid to provide reliable site URLs to patients, we could all be ahead and learn. I even had one doctor ask me if I would be looking up information on the internet. When I said yes, I was told not to come back to his practice.
I have become more savvy over time and slowly learned – on my own and in correspondence with others what ignore and how to find reliable information.
With the vast online resources now available to both patients and doctors with their iPads, iPhones, patient portals, and computer systems, it is shocking to realize how little meaningful information is made available to patients who are hungry for this information. Although it is understandable that doctors do not want to be innundated with questions and articles that their patients have printed out from a web search, if the doctors would just provide specific links to very targeted information resources that are disease specific to the patient, it would save a lot of miscommunication for everyone.
Social networks are by no means the end all. They are another resource for information, connection and comfort when patients have no other way to find the information they need. We want patients to be engaged and active in their care. In all my articles, books, blog posts I always emphasize that the patient should always check with their doctor before taking action on any web information and understand that together with their doctor they make final decisions on treatment choices.