Where Do We Go from Here? A Health 2.0 Progress Report

Healthcare consumers may be the driving force behind Health 2.0, but are they really in control? And who knows what the final destination will be?

According to the bloggers and physicians interviewed for this article, mapping the progress of Health 2.0 depends on your view of the forces powering the movement. In my opinion, patients are without question the fuel for the machine. Without tech-savvy, proactive patients rooting around for information in online health communities, there is no market for entrepreneurs, hospitals, insurance companies, and other healthcare organizations to build, expand upon, and innovate with existing Health 2.0 networks and technologies.

The very idea of “innovation” is the point of contention. Are patients and doctors, with the creation of each new startup, writing the manual on Health 2.0 from which all future research and development will be drawn? Or are companies such as Microsoft and Google synthesizing research with their knowledge of social networking and massive technological power to create the tools that users will rely on to drive their online healthcare experience in the future?

Those in the field offer a mixed bag of responses, but in the end suggest that no one—not patients, doctors, nor businesses—is taking definitive steps to assume the industry’s Health 2.0 leadership role. John Norris, a researcher who focuses on healthcare support groups in virtual worlds and developer of john-norris.net, believes that effective, patient-driven Health 2.0 initiatives suffer from a lack of resources and an authoritative knowledge base, and companies are often too cautious with both their initial investment and decisions to get involved in earnest.

Overly cautious business involvement with Health 2.0 can be attributed to a host of causes. A lot of the promise of Health 2.0 stems from its electronic existence, giving individuals oceans of information to sample and share together for the betterment of personal healthcare. But as you’ve read in these pages and in other medical news and literature since the turn of the century, the many debates over the efficacy of the Internet and medicine, EHRs, PHRs, and everything in between, remain largely unresolved. What these debates ultimately boil down to is money. The models that show how to make wildly profitable enterprises out of EHRs and Health 2.0 do not yet exist. But when the model is perfected, investments will pay off , and the debates will end.

This is why Craig Stoltz, principal of Stoltz Digital Strategies and author of the blog Web 2.0h…Really?, says that he believes industry will ultimately push the evolution of Health 2.0. “Healthcare companies see Health 2.0 as a way to save money on customer service; entangle themselves into long-term relationships with customers; gain new customers; and create new revenue streams,” he explains. “The growth is driven more by the industry now than the users.”

Elmer Bernstam, associate professor, Health Information Sciences and Internal Medicine, University of Texas School of Health Information Sciences at Houston, disagrees. “Healthcare is not currently structured around information technologies,” Bernstam says. “For example, procedures and in-person consultations are generally reimbursed. Although there has been some success in getting paid for online activities (eg, virtual visits), as far as I know, these are the exception rather than the rule. Unless something changes, I think that Health 2.0 will continue to be a user-driven phenomenon.”

Bertalan Meskó, a medical student at the University of Debrecen, Hungary, and author of the blog ScienceRoll, thinks that might not be such a bad thing. Meskó envisions Health 2.0 as an entity that should remain first and foremost the domain of patients and physicians and fears that if pharmaceutical and medical device companies recognize the power of Health 2.0 tools, their presence will erode the ability of patients and physicians to be strong voices in the online community.

“That’s what we try to avoid by informing patients and doctors about the possible implications of Web 2.0,” Meskó says. “I’m quite confident regarding the future of Health 2.0, as I realize the so-called e-patients will lead the way here. E-patients will change the way medicine is practiced and healthcare is delivered. Medical professionals also have to realize they must meet the expectations of e-patients.”

INFORMATION OVERKILL

While no clear Health 2.0 leadership has emerged, physicians and patients remain the main drivers and focus of the movement. Unfortunately, despite its benefits to these groups, they face a problem with Health 2.0’s medium, the Internet. The expansive size of the Internet is a status quo problem, but that does not change the fact that it negatively affects the patient—physician relationship.

“Web 2.0 creates infinite possibilities for social interaction and discussion in healthcare, but it also creates an enormous amount of ‘info-noise’ in medicine,” says Dean Giustini, biomedical branch librarian, University of British Columbia. “While it is true that the blogosphere has changed the way that citizens share their ideas and opinions, how many people doing health-related research on the Web understand the difference between hard, cold facts in medicine and mere opinion? Not many.”

The extent to which physicians utilize Health 2.0 tools compared with patients is debatable. The Pew Internet Project estimates that between 75% and 80% of Internet users have looked for health information online, while Harris Interactive estimates that 66% of all adults have done so. Jupiter Research’s US Online Physician Executive Survey, 2007 indicates that an estimated 89% of physicians reported searching the Internet for clinical information. For better or worse, however, the consensus seems to be that patient behavior is shaping Health 2.0.

Norris feels that “organizations with resources will be able to create more valuable areas within virtual worlds” but “nimble, nonauthoritative- seeking groups may always be in the lead.” This is a concern for Bernstam, because coupled with a “tremendous unmet consumer need for health information” are few, if any, controls over poor and inaccurate health information online. While Bernstam concedes that there is evidence of self-correction in online communities, “there is also evidence that consumers do not discriminate based on information quality.”

Dr. Henry Potts, lecturer, Centre for Health Informatics and Multiprofessional Education, Royal Free & University College Medical School, University College London and principal investigator on the LOUIS project notes that in his 2002 study Survey of Doctors’ Experience of Patients Using the Internet, “the volume of material seemed to matter more than traditional fears about the accuracy of information.” More interestingly, Potts discusses the idea that “both patients and healthcare professionals are feeling swamped, yet perhaps both sides have yet to recognize that this is a common problem.”

If Health 2.0 is about social networking and information sharing, chief among other things, and some 80% of Internet users and 89% of physicians are searching the Internet for health information, then that lack of recognition of a “common problem” raises questions about what exactly patients and physicians are doing with the information for which they are searching. Perhaps it’s a gross assumption that the average patient, simply because he or she searches for medical information online, knows or even cares to know about Health 2.0. “I think patients are much less aware of this notion of Health 2.0,” says Potts. “They may well be participating in behaviors or online activities that we would label as Health 2.0 but without reflecting on what they’re doing in that way. Patients are also generally part-time, in a sense. They’re off living their lives, which may or may not entail a variety of Web 2.0 activities, and only sometimes being a patient. Healthcare professionals are full-time, immersed in these issues. I think they’re much more involved.”

By the same token, it is Meskó’s experience that many doctors would not be able (even unwilling) to hold up their end of the conversation even if a patient broached the subject. “Hungarian doctors always tell me they don’t have time for these Web things,” Meskó recalls. “This is quite ironic. When I tell them I have at least 180 medical blogs, websites, and journals in my RSS feed reader, they don’t believe me. For me, it means it will still take a few more years and a lot of additional work to persuade them to use these tools and to help them understand the main concept of Web 2.0.”

OPPORTUNITIES LAGGING

This incident highlights one area in which Meskó believes progress in Health 2.0 has stalled: education. “Nowadays, there are more and more medical community sites, but where these fields should improve a lot is education. We must educate not just doctors but patients about how to use these tools. I hope the Medical Education Evolution community, and Webicina.com take important steps in that direction.”

In his own experience, Potts believes that the government response to Health 2.0 has been the weakest. “In the UK, the Department of Health is still pushing ‘Health 1.0’ solutions without success.”

Benjamin Hughes, a researcher in the Department of Information Systems at ESADE, Ramon Llull University, is critical of Health 2.0 for making “no progress in measuring its impact on patient outcomes.” Bernstam, however, sees that as the starting point for real progress. “Perhaps the biggest developments have centered on personal health records that have been offered by a variety of companies, such as Google,” says Bernstam. “This may shift the health information economy, giving the consumer greater control over their health information. They may be able to benefit from it in new ways, like getting paid for allowing researchers to mine their information. This can change the way that we do research from the current format (learning from very few clinical encounters) to a future model (learning from many clinical encounters, and capturing and learning from experience that is currently lost).”

As for now, Bernstam feels that consumers lack an effective means for dealing with information. “Consumers have plenty of information, but that does not necessarily allow them to make better decisions. In some cases, they are not able to make sense of the information.”

That won’t occur, predicts UBC’s Giustini, unless “thinkers in Health 2.0 can come up with good reasons for patients to abandon their most-visited social media tools for specific niche tools in Health 2.0,” adding that good foundational articles on the topic are also needed. Stoltz sides with Giustini, predicting the failure of large, patient-driven communities and the rise of niche verticals “serving very specific groups of people with rare and/or difficult conditions, improving outcomes via patient-to-patient and patient-to- provider communications.”

LOOKING FORWARD

In June 2008, Dr. Luo, Physician Editor-in-Chief of MDNG: Psychiatry Edition, identified many of the people and companies driving the development of Health 2.0 innovation. The drivers identified in that article all work toward the goal of better patient care. If these resources are all pointed in the same general direction, there is the potential for interaction and even convergence of different tools and areas of practice.

Potts anticipates the possible interaction between Google Health, healthcare organizations, and governments. “If Google Health takes off in a big way, will they be in a position of creating de facto standards, irrespective of government or the big HMOs?” Potts tempers that thought with the possibility that “different national systems for organizing healthcare may trump such attempts.”

Norris believes the addition of a PatientsLikeMe-type section to the likes of WebMD, in tandem with research techniques that would allow patients to better understand their condition and situation, would be a potent resource.

Bernstam’s stance aligns with that of Norris, citing the proliferation of data in electronic form for research purposes. “The increasing availability of clinical data in electronically readable form can potentially have enormous consequences,” Bernstam explains. “I already mentioned the PHR example, which can fundamentally change the way that we learn new scientific and medical information and evaluate providers. Health 2.0 has the potential to help us extract useful knowledge from the deluge of electronically readable information.”

How far away these possible developments are is tough to predict, but as both Potts and Bernstam emphasize, humans tend to overestimate progress in the short term and underestimate progress in the long term. Hughes believes that Health 2.0 is still “very marginal” within healthcare but that real progress will seemingly come all at once. “We are looking for the tipping point, where we have enough Internet-savvy patients and doctors who want to use the tools and some infrastructure that deals with issues of data security and privacy.”

Stoltz believes that changes affecting Health 2.0 will come about as a result of federal funding, as he lacks faith in the idea of widespread PHR creation. “Federal support for health IT will drive a shift from paper-based to digital records,” Stoltz explains. “This will reduce medical errors and inefficiencies somewhat and will mainly happen within institutions. I’m not convinced patients will create their own medical records online.”

Stoltz also sees government and market pressure coming to bear on insurance companies, which will be forced to develop successful Health 2.0 management tools and practices for patients who consume the most care resources (diabetics, asthmatics, etc).

Finally, Stoltz posits that real benefits to consumers will come in the form of comprehensive healthcare reform rather than Health 2.0 initiatives. “The major savings in healthcare will come from insuring most of the 47 million who don’t have it, spreading routine care and preventing high-cost, late-in-thegame interventions and ER visits. Other savings and improvements will be incremental.”

Giustini, while expressing his belief that the United States must overhaul its health insurance system, counters that a “universal healthcare system can benefit from the exceptional information-sharing possibilities generated by Health 2.0. Our healthcare system can learn a great deal from the United States’ private system and the important role that innovation plays in improving patient care.”

Bradley Schmidt is a freelance healthcare journalist.

Long Gains - Our interviewees identified these resources as making the biggest strides in Health 2.0

• eMedicine.com
• GPnotebook
• Healia
• Wikipedia - “Do a web search on most any illness or drug and the relevant Wikipedia page is going to be near the top of the search results. Wikipedia isn’t trying to be a Health 2.0 application, yet it is influencing patients through a Web 2.0 model.” —Henry Potts Brigham and Women’s Hospital
• GroupHealth - “Group Health in Seattle is integrating technology into clinical practice better than most. So is Harvard’s Brigham and Women’s Hospital. These successes will encourage wider adoption once tools are identified and improved outcomes are demonstrated.” —Craig Stoltz
• Sermo
• Organized Wisdom
• The Health 2.0 Conference
• The Medicine 2.0 Congress
• CureTogether - “CureTogether is a good example of convergence of separate Health 2.0 fields.” — Bertalan Meskó
• PatientsLikeMe - “PatientsLikeMe has become a unique tool for medical research in the past few years.” —Bertalan Meskó
• UBC Health Library Wiki - “I think wikis have been making strides in Health 2.0. Take a look at the new wikis. Dean Giustini created a health librarians wiki that has been used by not only health library classes, but also some practitioners. Giustini has encouraged other health professionals to add and create their own information niches based on their expertise. This is a new publishing paradigm—one that is not unlike when the Gutenberg press first came out. It’s a small change but with large implications, particularly in the years to come.” — Allan Cho, Program Services Librarian, Irving K. Barber Learning Centre, University of British Columbia