Medicine 2.0 and You

If you haven’t heard the term “Medicine 2.0” before, don’t panic; you are not alone. As the organizing chairman of the Medicine 2.0 conference at Stanford University, a lot of people ask me, “What is Medicine 2.0?” I sometimes flip the question around and ask “What does it mean to you?” In fact, the definition is evolving. In broad strokes, Medicine 2.0 is about how emerging technologies, such as social media and Web 2.0 (which includes blogs, video sharing, podcasts, etc.), are used to improve health care and empower the practice of medicine. These new technologies allow individuals to communicate, collaborate, and share knowledge in ways that haven’t been possible before. The things that people are doing with technologies such as Twitter, Facebook, and other Web 2.0 sites are not only creative and innovative, but some actually could make a measurable impact on health.

Why Social Media and Web 2.0 Matter

Numbers don’t lie, and the story they tell shows a remarkable change in how people are communicating and how technology impacts their daily lives. Social media is now more popular than e-mail. Americans spend about one-quarter of their total online time using social networking sites such as Facebook, while e-mail comes in around 8% of total online time (http://HCP.LV/WamD02). Half of the world’s Internet users—500 million people—already have a Facebook account (http://HCP.LV/krKhYO). In the US alone, there are 149 million active Facebook users, 70% of whom log in once a day (http://HCP.LV/jJ8p8L).

Let’s look at the number of years it took technologies to reach 50 million users (http://HCP.LV/kkfFq5): radio (38 years), television (13 years), Internet (4 years), and social networking (Facebook reached 200 million users in less than one year; http://HCP.LV/mnxREg). Anything that is so innately tied to our patient’s everyday lives should matter greatly to physicians. Here are ten reasons why:

1. E-patients are on the rise:As Internet access and mobile technology become widely available, patients are turning to social media and the Web to form online communities and research health information.

According to the Pew Internet & American Life project, more that 60% of all Americans and 83% of those who have Internet access search for health information online (http://HCP.LV/mDwTfR). Researching and looking for health care information is the third most popular online activity. These e-patients are more likely to use social media and Web 2.0 technologies to form communities of likeminded individuals to work together to find and interpret medical information and better manage health and chronic illnesses. The next logical step is for e-patients to engage with physicians and health care professionals through these networks to provide guidance and expertise to their discussions.

2. Participatory medicine:Patients are now taking an active role in their own health care, treatment, and disease management. Social and Web 2.0 technologies have empowered patients to actively participate in their health care. A recent study by Pew on peer-to-peer health care found that one in four patients with chronic ailments, such as hypertension, diabetes, heart or lung conditions, cancer, or other chronic diseases have ventured online to find other patients with similar problems (http://HCP.LV/fXOBMi). But they are not alone. Caregivers of patients with chronic illnesses, people who experienced a medical crisis in the previous year, or people who experienced a significant change in their physical health are also more likely to seek online health resources. Physicians and health care providers should care about how patients are using social media and Web 2.0 in order to stay relevant and provide context to information their patients are receiving.

3. Interaction and collaboration from personal health records (PHR) and electronic health records (HER):Advances in EHRs are improving patient care. Northwestern Medicine, which is associated with Northwestern University in Chicago, implemented an EHR alert system that notifies doctors when a problem is identified in the current patient care plan, which has led to an improvement in medical management (http://HCP.LV/j0pfAc).

We might not think of EHRs as social media or Web 2.0 technology, but Web-based EMRs that facilitate participatory information sharing and collaboration certainly provide the potential to transform the way we think about health information. In the Northwestern study, a simple yellow light flagging important information for doctors increased the prevalence of prescribing cholesterol-lowering medications in heart disease patients from 87% to 93%, pneumonia vaccinations increased from 80% to 90%, and colon cancer screenings rose from 57% to 62%. PHRs may allow health care providers to interact with patients in a similar manner, prompting novel ways to encourage medication compliance and healthy behavior change.

4. Patient communities of practice: Communities of practice are providing a new way for patients and practitioners to collaborate, share, and research health care information and solutions.

Online Web 2.0 patient communities, such as Patientslikeme.com, allow patients with similar conditions to meet online and share information about what does and does not work. Some of these websites even allow patients to log and share their data (e.g., their weight, blood sugar, or functional assessments) with other users. Physicians should care about communities of practice because they hold great potential to leverage the experience of large numbers of patients to help individuals improve their health.

5. Health Insurance Portability and Accountability Act (HIPAA)/privacy issues:Despite concerns over privacy and HIPAA, doctors can still make use of social media to communicate with patients, family, and providers.

Social media is a relatively new phenomenon, but one that has shown tremendous growth in a relatively short time. There are some simple points about HIPAA and privacy issues relevant to social media that everyone can follow. 1) Try to be responsive to your patient’s communication preferences: e-mail, texting, and social media are acceptable ways for physicians to communicate with patients, the public, and other physicians. You just have to make sure you protect health information. 2) Know what is acceptable: answers to general medical questions that don’t mention or identify a particular patient don’t fall under HIPAA. For instance, many of your patients may find this advice useful as a tweet: “Flu season is approaching, join us for our flu clinic this Tuesday.” 3) Follow the elevator rule: if you wouldn’t be comfortable discussing it on an elevator, don’t discuss it in social media. 4) Maintain professional accounts for your health-related social media channels. Separating your personal and private lives will help ensure your messages are sent to the right audience.

6. Web 2.0 is rating you: Web 2.0 applications such as Healthgrades (http://HCP.LV/jQLMSH) allow patients to rate their physicians and post reviews online for other patients to read and contribute additional reviews.

A recent analysis of roughly 5,000 physician reviews by Bassam Kadry, MD, and colleagues at Stanford University showed that patients generally give their doctors favorable online reviews (http://HCP.LV/mS52Xs). Do you know what your patients are saying about you on social media and Web 2.0 sites? Physicians should care about how patients are using social rating sites because it is important for your online reputation to accurately reflect your practice.

7. Health care advocacy:Social media and Web 2.0 have become a platform for patient advocacy and education. For example, type 2 diabetes patients have used social media outlets to advocate the use of bariatric surgery and other management options, as well as share their stories of support and positive impact.

Patients with ailments are using social media and the Internet to advocate their positions and obtain information to help themselves and others make health care decisions. Physicians should care about empowered patients and health care advocacy because accurate medical information and balanced physician perspectives can add valuable insight to the conversations occurring in social media and on the Web.

8. Direct communication:In the light of major health concerns and news, such as radiation exposure from the earthquake in Japan, social media and Web 2.0 offers an efficient and direct line of communication that doctors can use to reach out to patients.

Public health departments and other government agencies are now incorporating social media and text messaging into their communications plans, and physicians shouldn’t be an exception. Medical information during a disaster can provide important, lifesaving advice to a large audience if it is delivered in a timely and effective manner. In addition, Web 2.0 sites, such as Google’s person finder, allow families and friends to quickly search for survivors in a disaster, such as the recent Japanese earthquake and tsunami. Information can be easily submitted about survivors, and the details can help reunite victims with their families. Physicians should care because direct communication resources like these can be a lifeline for patients and their families in a crisis.

9. Collaborative information and crowdsourcing technology:The availability of data in PHRs and EMRs allows researchers to study, identify, and map out patterns of disease, treatment, and demographics. These findings have the potential to accelerate the pace of health innovation and research.

In April, Nature Biotechnologypublished the first paper using patient self-reported data to examine the use of lithium for the treatment of amyotrophic lateral sclerosis (http://hcp.lv/NpbA241). Some people touted the study as the first “patient-initiated clinical trial,” because the data was obtained by patients logging their own clinical disease status over time through the site of Patientslikeme.com. The study is remarkable for showing the potential of crowdsourcing health research in the public domain and using the information to obtain scientific evidence of treatment effect. While these types of studies cannot replace rigorous double-blinded, randomized, placebo-controlled clinical trials, they can accelerate the pace of innovation by rapidly providing preliminary data to identify promising therapies worthy of further rigorous evaluation.

10. Health care surveillance:Online communities and health care technology provide a platform to track trends and progressions of disease in real time. In April, researchers at Children’s Hospital Boston published a paper in PLOS Oneshowing that patients are willing to provide health data in real-time over social networks to allow researchers to conduct public health studies (http://hcp.lv/kYcWJM). In this case, members of TuDiabetes.com participated in an online “data donation drive” that allowed patients to share biomedical data (HgA1c levels) with the community using a consented model. More importantly, patients wanted to share their data with the world, with 81% opting to display their data as a pooled value in their region, and 34% even agreed to have their data posted to their public social networking profiles.

Want to Learn More?

Now is the perfect time to engage and participate in the exciting and empowering opportunities these technologies offer. If you want to learn more about how Twitter, Facebook, YouTube, and other technologies are changing medicine, I encourage you to come to Medicine 2.0 at Stanford University in September 2011 (http://HCP.LV/MED20Se). It will be a fantastic opportunity to find out what all the buzz is about!

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Dr. Chu is an MDNGeditorial board member and the organizing chairman of the Stanford Summit and Medicine 2.0 @ Stanford University. The three-day conference will be held on the Stanford Medical School campus September