I have argued the value of transparency in healthcare many times (note: scroll past Robert’s entries to view mine below)! But I have yet to argue the value of transparency in relation to other aspects of healthcare beyond just cost.
Shame on me!!
A recent article in BusinessWeek highlights Health 2.0 – the emergence of “patients as partners.” Featured is PatientsLikeMe an online social network with communities specifically for patients with neurological, neuroendocrine, mood, and autoimmune conditions such as MS (multiple sclerosis), ALS (amyotrophic lateral sclerosis), and HIV/AIDS. The site provides comprehensive tools which allow patients to track and document everything from their symptoms and lifestyle, to current medications and other recommended treatment.
What is new and revolutionary about this site?? A lot!! To members of “Health 2.0″ PatientsLikeMe is leading the way in engaging pateints as partners, “experts” of their care. But to the media, the idea of patients openly discussing their health and leveraging this information to improve their own care is a “new idea.”
Business Week writes, “PatientsLikeMe and a proliferation of similar startups are building a new business predicated on the belief that the wisdom of crowds of patients will bring insights, solace, and most of all, power.
Power because, as it turns out, patients talking among themselves on a global scale with complete transparency produces all kinds of unexpected results. Drug side effects can be reported to regulators by the patients experiencing them, without waiting for the manufacturers to come forward. Pharmaceutical companies can use social networks to recruit subjects quickly for clinical trials, speeding up the pace of research. For that matter, patients can simply band together and run their own clinical trials, leaving drug companies and physicians out of the loop.”
So what is the value of transparency in relation to your healthcare and health conditions? Wisdom of the crowds.
As it turns out, your health experiences can help someone else find out about a new drug, about the side affects of a drug they have just been prescribed, or possibly a stretching technique that relieves stress. The possibilities are endless it seems when conceptualized on a global scale. Our health systems may be set up differently, but the way in which an individual experiences a drug or symptoms of their condition may be beneficial to others across the globe, regardless of whether they have health insurance or not!
Three cheers to PatientsLikeMe for leading the way… And most importantly, thanks to its many members for being transparent, and recognizing the value!
For more information on patientslikeme amd ways in which they are revolutionizing healthcare visit their website at www.patientslikeme.com or watch their featured spot on CBS Evening News.
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Innovative Quality Needed In A Dysfunctional System
The Health Care Industry, particularly in the United States, needs to evolve and revolutionize for the benefit of those who utilize the services of this industry, which is the public. Among other issues that need to be rebuilt and corrected, there is the issue of patients misunderstanding their health care providers who happen to overestimate their patients’ health literacy. That seems to be in the process of being corrected in large part- that issue.
Health care has been called recently the most crowded market in cyberspace. There is a strong desire by these so many others to collect, refine and share health care and medical information they seek so often in order to gain valuable knowledge- such as with patients who have some concern or actual disease or medical condition , unfortunately. Patients desire to manage their specific health concerns in order to supplement the advice and treatment regimens provided by their health care providers. Patients do this with what essentially is a subculture of this healthcare online network avenues more are discovering and joining for their own health and desire for increased knowledge about medicine and health care, which includes health care providers as well. Presently, there may be 100 or more new and innovative sites which are called, as a group, Health 2.0- social networking sites, and began their creation well over a decade ago. Mr. Matthew Holt created the term ‘Health 2.0’, and also created: http://www.thehealthcareblog.com.
Types of Health 2.0 users and why they seek information from these internet sites include reasons such as to manage their own health and possible disease they may have, as well as make treatment decisions regarding these issues. About 150 million people are users on Health 2.0 for this reason, which means that they now exceed health care providers as a primary source for them to receive medical and health care information. In addition, there are those who seek information for reasons of medical education, which again may include the public and the medical profession for other different reasons. The medical profession and its members utilize Health 2.0 to enhance their own medical practices for the benefit of their patients. All reasons for why they wish to become informed are valid and ultimately beneficial. Benefits of Health 2.0 include the potential to increase the qualities and outcomes of patients with various disease states. Also, Health 2.0 networking sites can decrease health care costs as well as reduce medical mistakes and decrease the number of doctor visits for patients. Patients are happier and healthier because of this, as they are now equipped, empowered, enabled, and engaged in their own health, thanks to health care social networking sites that now exist.
It is in fact a method of participatory health care that allows these others the ability to rapidly share, classify, and summarize individual health information. This improves health care systems and experiences that benefit the public health, overall.
How do the users of such systems perceive this new concept and paradigm with health care? Most users of these health care systems find the information they seek and locate are very useful for them. Most also seek and locate information regarding a particular disease or medical problem. The user of such sites usually visit many medical and health care sites on particular health care social network locations, and others seek such information before their next doctor visit to be knowledgeable and prepared about their own health. This will and does influence their medical decisions regarding their care and treatment options.
For those others who utilize health care networking sites designed for patients, or community sites, they may become members on particular sites in order to communicate with other members who may have similar health or medical concerns as their own. They are allowed to quantify their own experiences by sharing and annotating their symptoms and treatments, if these things exist. So this system on such sites ultimately allows patients to manage their diseases with this advice available immediately to them by others who have accessed the site another may be exploring at a certain time.
Other categories of health care social networking that are not necessarily designed specifically for patients and consumers include general interest sites, medical research sites, disease and medical condition sites specific to each ailment. There are also those sites that offer health advisory services, heath financial services, personal health records, comparative health website locations, representative consumer empowered tools, as well as other health care network sites that may not fall into a specific category.
Yet all Health 2.0 sites seem to share similar themes are qualities:
- They impact noticeably on the traditional and collaborative practices historically associated with the medical profession and their relationship with their patients. These sites allow the users and providers to connect with each other in a new and exciting way.
- Personal healthcare can be provided by users connecting with health care providers in such a way.
- Partnerships can be formed to reform health care delivery, as sites with Health 2.0 promote outgoing medical education
- The participants, or users of these sites, are involved to a greater degree now that these sites exist.
Others that choose to utilize their health care needs with Health 2.0 web sites appear to be healing not only themselves, but health care delivery overall by the utilizing and sharing that occurs on such sites.
Patients are indeed a virtue, as they and others are democratizing health care with this new avenue of Socratic learning.
This, indeed, is authentic patient power.
Thank you,
Daniel Abshear
Phone: 636-639-1027