Health 2.0: Do It Yourself Doctoring

For hundreds of years, the doctor/patient relationship has been asymmetric, with the physician traditionally seen as holding the balance of power and the patient being dependent on the physician. While there are many reasons for this, one of the most important is the asymmetry of knowledge: The physician controlled almost all information and often parsed it out sparingly. Over the past 30 years, beginning with the first direct-to-consumer advertising in 1981, we have witnessed a dramatic shift in the information available to patients. And this shift has contributed to a noticeable increase in patient autonomy and choice in medical care. However, the revolution has just begun, brought to you by the Internet and Health 2.0.

Health 2.0 is an outgrowth of the Web 2.0 era. Using modern, flexible Web site design methods, Web 2.0 Web sites typically leverage social networking and the collective knowledge of the masses to create value and quality for users of the Web site. Two good examples of Web 2.0 are Facebook and Wikipedia. Health 2.0 Web sites apply these same principles and designs to health care.

Even in it's infancy, Health 2.0 Web sites have begun to demonstrate the potential to dramatically shift the doctor/patient relationship and perhaps even disintermediate the need for a physician in some cases—in other words, remove the middle man. Eventually, Health 2.0 may bring dramatic change to the economics and practice of medicine itself. Through Health 2.0 Web sites a patient can do amazing things: search for and obtain tailored, high-quality medical information, medical diagnoses, personal medical record keeping, exhaustive SNP analysis of their own genome, and even some do-it-yourself epidemiology.

Paul Bleicher

Searching for health information

The most common use of the Internet for health purposes is the search for health information. Since the Internet first became publicly available, patients have been using the Web to gather information about their health. But the content was often uneven and easily dismissed when brought to physicians and sometimes simply dangerous. Although Google Health and its cousin Microsoft Health Vault offer an improved search of high-quality health Web sites, independent Health 2.0 Web sites such as OrganizedWisdom have begun to deliver high-quality information about patient illnesses and treatments.

OrganizedWisdom uses physician "guides" to vet search information as high quality and organize it in an easily digestible form for individuals seeking answers to health care questions. Armed with data from these sources, patients sometimes know more about therapies and clinical trials than their physicians, and are now taking on new roles in driving the doctor/patient dialogue.

Beyond information, some of the latest Health 2.0 Web sites actually allow patients to disintermediate the physician in many cases, much as Amazon eliminates the bookstore middle man and Dell the computer store. Through online Web sites, patients are now able to comparison shop for medical care in some markets (Carol) and buy care packages in the same way they might buy a book from Amazon. Additionally, dozens of Web sites allow consumers to rate their physicians, such as Vitals and rateMDs, and many have links to make appointments (ZocDoc) or search for disciplinary actions and malpractice claims against a physician. These sites allow patients to make more informed choices about their care and share with others their experiences.

Communities of patients

Social networks and communities are the bedrock of Health 2.0 and continue on the theme of shared information empowering personal health decisions. The most ambitious of these is Revolution Health, which provides health information, physician searches, health blogs and information, and many different health communities. Other similar communities such as iMedix follow the same concept of a general community for all health and wellness issues.

Many Health 2.0 communities specialize in a particular disease or small group of diseases, creating a Facebook-like user experience. Targeted communities have sprung up on Web pages devoted to diseases such as diabetes, mood disorders, and alcohol abuse and to wellness topics like exercise. Through these sites, patients are sharing their experiences, motivating commitment to treatment, and providing a support community for each other.

One of the most dramatic demonstrations of patient empowerment through the Web is PatientsLikeMe, where patients with severe chronic conditions post detailed, longitudinal data on their disease courses, treatments, and side effects. Interestingly, this information is often quite intimate, and patients are posting these details without concern for their privacy. By cleverly structuring, aggregating, and hyperlinking this data, PatientsLikeMe allows patients to understand how their symptoms and treatments compare with others. With thousands of patients reporting, the aggregated information provides users with a rich, understandable, and intimate view of their illness.

This type of information has never before been available to patients and it might even teach a physician a thing or two—although it may create some headaches for pharmaceutical companies and regulators who have to sort through it, looking for safety issues.

Patient empowerment

Physicians sometimes don't have the time needed to completely educate their patients about all the medicines they are taking. In fact, physicans and pharmacists alike may sometimes overlook important interactions. Again, Health 2.0 Web sites such as PharmaSurveyor, iGuard, and doublecheckMD allow patients to enter their medicines, search for interactions and adverse effects, and even be notified when new ones are identified and reported.

A plethora of personal health records (PHRs) have recently arrived—from the Google and Microsoft entries to Medem, MyMedicalRecords, MedCommons, and many others. These PHRs allow patients to keep a permanent, longitudinal record of their health data, either hand entered or linked from medical records, and provide access to anyone who needs it—from new physicians to emergency room physicians. The transfer of authority over medical records, although slow in coming, is a major step in patient empowerment.

Patient empowerment through the Internet can go far beyond searches, communities, and record keeping. If a patient doesn't want to bother with actually scheduling a visit to a physician, he or she can log on and have an immediate online visit with one through AmericanWell. A variety of specialists are immediately available for medical consultation and referral if necessary, with notes from the encounter available to the patient and their nonvirtual physician. Obviously online visits aren't going to work for many medical problems, but they can be enormously empowering to patients with simple questions and easy to address medical issues.

Sometimes self-diagnosis may require a laboratory test or two, something previously restricted to physicians—until Health 2.0. Now, a patient can go onto MyMedLab and order from hundreds of lab tests, go to a local lab for the blood drawing, and receive the results without the intervention of any physician. More importantly for some patients, these tests are performed outside of any medical record or insurance record.

Genetics, genes, and beyond

Going beyond personal care, we come to the role of familial and genetic components of health and illness. Simply understanding one's family history of illness can be very valuable for identifying and mitigating medical risks and even medical diagnoses. MyFamilyHealth allows members of a family to create a shared, detailed family tree that can be annotated with medical histories, providing valuable knowledge for the patient and an important tool for the physician.

Nowadays, there is much to discover about genetic diseases. Through sites like 23andMe, a patient can order (now for only $399) a genetic SNP analysis of more than 80 different genetic loci for diseases, genetic traits, and health conditions. The amateur geneticist can determine whether they have the genetic traits associated with macular degeneration, type 2 diabetes, various malignancies, and other less ominous traits. In some ways, this is the ultimate in empowerment, but may leave some patients with too much information.

An interesting application of Health 2.0 and Google maps "mashup" technique is the do-it-yourself epidemiology site, WhoIsSick. With this site, anyone who believes they have an infectious illness such as influenza or a gastrointestinal virus can enter their symptoms and their geographic location on a Google map. They can then search for geographic clusters of patients with similar symptoms occurring within a specified time window, theoretically giving clues to developing outbreaks of nasty viral illnesses.

Conclusion

Medicine in the United States is one of the few industries in which the consumer of the products and services has little to no say in the setting of prices and delivery of services. The painfully cumbersome economic infrastructure of health care has thus far prevented a serious overhaul in consumer choice to bring it up to the same level as in almost any other industry. However, the transformative nature of Health 2.0 may very well bring choice and the free market to the consumer long before the government can or will.

Paul Bleicher MD, PhD, is the founder and chairman of Phase Forward, 800 Winter Street, Waltham, MA 02451, (888) 703-1122, paul.bleicher@phaseforward.com, www.phasefoward.com. He is also a member of the Applied Clinical Trials Editorial Advisory Board.