October 27, 2008

On Point — Healthcare Organizations Tiptoe Into Health 2.0
By Elizabeth S. Roop
For The Record
Vol. 20 No. 22 P. 20

While consumers have embraced social media, facilities are still testing the water. But their time is coming, say experts.

When the thriller Awake was released in 2007, the Medical University of South Carolina (MUSC) saw an opportunity to educate the public on the movie’s central plot point: anesthesia awareness. But it didn’t distribute brochures or hold lectures. Instead, MUSC took its message to the popular video-sharing site YouTube in an episode of MUSC Insight.

It wasn’t MUSC Medical Center’s first foray into the world of social media, nor will it be its last. The hospital is one of a handful of healthcare organizations that has recognized the power the Web holds for reaching patients and other consumers with targeted messages in ways that just a few short years ago would have been considered unorthodox.

“If you can generate a buzz around [a current event] and relate it back to you, there can be a benefit, even if it’s just brand awareness and the knowledge that we have a wide range of expertise,” says Kim Haynes, MUSChealth.com’s Web content director, when describing the facility’s social media strategy.

The YouTube channel was part of a pilot, one Haynes hopes to resume in the near future. Meanwhile, MUSC has been making good use of other social networking tools, including podcasts, videos, and e-newsletters, for which it utilizes RSS feeds to maximize exposure. Its site also features interactive quizzes that allow visitors to test their health knowledge and the capability to ask an MUSC Med-U-Nurse a health question via e-mail.

The mobile version of the facility’s site is undergoing expansion and one is under development for MUSC’s Hollings Cancer Center. Plans are also underway to redesign the video library to integrate it more tightly with the podcast library and to launch a social networking site for patients of the MUSC Digestive Disease Center who are suffering from irritable bowel syndrome—tapping into one of the largest consumers of social media.

“People with chronic conditions and the newly diagnosed are the primary audience for online media,” says Haynes.

From Web 2.0 to Health 2.0
Some give credit to individuals battling diseases and chronic conditions and their loved ones for the emergence of Web-based social networks centered on health and medicine.
In “The Wisdom of Patients: Health Care Meets Online Social Media,” a white paper from the California HealthCare Foundation, author Jane Sarasohn-Kahn noted that the rise of Web 2.0 allowed support groups to move beyond geographic boundaries to enable individuals worldwide to share personal stories and gain emotional support and knowledge from others fighting the same battles.

In short, she wrote that social media on the Internet is empowering, engaging, and educating consumers and providers in Health 2.0, a movement defined as the use of social software and its ability to promote collaboration among patients, their caregivers, medical professionals, and other stakeholders in health.

“People know Web 2.0 and people use Web 2.0 social media tools, so it’s perfectly natural for them to segue their use of Web 2.0 into their daily health activities,” says Sarasohn-Kahn, founder of THINK-Health. “The first wave of adoption was by some of the most engaged healthcare consumers … who tended to be very sick, pretty educated, and very technology savvy.”

She points to PatientsLikeMe.com, launched in 2004 by family and friends of a man suffering from amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease, to help manage the disease and make up for the lack of offline support. The site has since accumulated more than 3,000 detailed diaries from patients and caregivers from around the world and has nearly 2,500 patients in its ALS community alone.

The true power of Health 2.0 is illustrated by the experience of one PatientsLikeMe community member who was suffering from leg spasms. The low dose of medication prescribed by his physician wasn’t helping, so he turned to other members for assistance. He eventually connected with a patient in Switzerland whose spasms were controlled by a much higher dose of the same medication. He shared this information with his physician, who changed his prescription with positive results.

“That is a piece of data that a family physician or even a specialist in a local market would not have known without thousands of people going online to share their stories,” says Sarasohn-Kahn, adding that, through Health 2.0, “you have a broad range of opinions and experiences where, across them all, you can find new truths and findings that you couldn’t have with only a handful of patient experiences.”

But it’s not just the sick who are going online for answers to their health questions. According to “How America Searches: Health and Wellness,” a survey from iCrossing released in January and cited by Sarasohn-Kahn in the white paper, 59% of American adults used the Internet to find or access health- and wellness-related information in the previous 12 months, edging out physicians (55%) as the leading source of health information.

Of the online tools and resources used most frequently to locate health information, social media was the third most popular (34%), behind only health portals (46%) and general search engines (67%). Among social media platforms, Wikipedia was the most frequently used reference at 21%, followed by online forums/message boards (15%), social networks (6%), video sharing (5%), blogs (4%), and live chat rooms (4%).

The figures make sense to Matthew Holt, founder and author of The Health Care Blog and cofounder of Health 2.0.

“The biggest part of Health 2.0 has to do with search—how you take all the massive content on the Internet and use search tools to get the most useful information for the person who needs it at the right time,” he says. “It allows search and presentation in a very different, personalized way based on what is known about the individual.”

Holt points to advances by Google and Yahoo!, as well as medical search engines such as Healthline, OrganizedWisdom, and Kosmix RightHealth, as examples of how the emergence of Health 2.0 has changed the way online content is created, searched, and presented to better serve the needs of consumers.

“The issue with healthcare [information online] is that it’s searching with a long tail. If you have a fairly standard condition, that first page of information from Healthline or WebMD is pretty good for 70% of the people. But there may be something unique about you,” says Holt. “The change in the way content is presented [using the advanced tools] is fairly radically different.”

Treading Lightly
Despite the obvious and growing popularity of social media among consumers hungry for health information, provider organizations are not jumping en masse onto the Health 2.0 bandwagon.

There are plenty of reasons, including limited financial resources to invest in social media strategies. However, it is the quality and accuracy of user-generated content and the risk it carries that are most frequently cited as the reason healthcare organizations are treading lightly.

“With regard to user-generated content, there are a couple of challenges. One is that the content is not filtered, not processed, or not organized. It’s a challenge to do those things to user-generated content [and still have] the best end experience for a consumer,” says Greg Juhn, MTPW, senior vice president of product strategy at A.D.A.M., Inc, which licenses consumer-facing healthcare information to healthcare organizations for use on public Web sites and patient portals, as well as integration into medical record systems and other clinical applications.

“You can dig it or vote it up or down, but it doesn’t have the same level of educational experience that a production or editorial group would put around it. … Also, you have the challenge with healthcare that you don’t really want people just saying whatever they want. You want some level of credibility and an evidence base,” he adds.

Despite those concerns, proponents of Health 2.0 note that most consumers are savvy enough not to blindly trust information they find on the Internet, regardless of the source.

Also, as noted in “The Wisdom of Patients,” those online communities that are very active and have a broad membership tend to be self-correcting when it comes to shared information. One of the benefits of user-generated content is that the users themselves are able to quickly ferret out misinformation or marketing ploys.

“Over time, with Wikipedia and other sites with very engaged participants who believe in the community, support the community, and want to rid the community of any data that’s not pristine and true … we do see good data driving out the bad,” says Sarasohn-Kahn.

Juhn concurs that bad information is vetted out over time, and demand for more and better healthcare information is already resulting in better quality. However, speed is of the essence when it comes to correcting misinformation, and the healthcare community, including content providers, is right to be wary of entering an environment where they cannot maintain complete control.

“The challenge for a company like A.D.A.M., which provides physician-reviewed, trustworthy health information for our clients who want to provide that information, is that you can’t even let two weeks go by with something wildly inaccurate in it,” he says. “Having said that, there is tremendous value where all this is going. There is a huge amount of untapped value in all these life experiences people have had. … But just like you would have a physician involved in a wiki, you have to have some layer of processing if you’re going to be doing user-generated videos, comments, and feedback. There has to be a layer of filtering.”

Proponents are quick to point out that risks associated with the dissemination of inaccurate medical information online aren’t that much greater than they are when information comes from offline sources.

Recent studies have also shown that the use of social media tools may actually be powerful risk management tools. By proactively producing and disseminating videos to educate patients about procedures or medications, healthcare organizations’ liabilities are reduced because patients are fully aware of risks and expectations.

“The patient goes into the procedure with their eyes open, and you’ve taken the time to bond with the patient and humanize the process,” says Sarasohn-Kahn. “For many hospitals, they have an educational mission, so there are a lot of reasons to have your expert physicians who know about something to talk about it in a user-friendly, caregiver-friendly way. It’s a way to arm the public with solid, vetted, peer-reviewed information and battle the misinformation that’s out there.”

Not If but When
For MUSC, early ventures into the Health 2.0 environment have returned some promising, albeit intangible, results—enough to justify at least continued exploration of how best to expand and quantitatively measure social media’s impact.

“There are some things that we are considering doing that go a little deeper,” says Haynes. “For many of these social networking activities, it’s hard to track the data, but brand awareness is an obvious [benefit].”

She notes that the organization receives frequent feedback from patients who have viewed their podcasts or videos, as well as requests to let people post them on their own Web sites. Patients are also telling MUSC physicians that the reason they scheduled an appointment is because they listened to one of the podcasts.

“As with other marketing strategies, immediate ROI [return on investment] reconciliation is difficult, but we are definitely able to build relationships with patients via these mediums. As a result of the work we are doing, we hope that MUSC will be top of mind when the audience is ready to make a healthcare decision,” says Haynes.

Successful ventures into Health 2.0 by larger organizations such as MUSC will pave the way for smaller community hospitals and physician groups to follow suit. That, coupled with increased online availability of quality ratings and the trend toward price transparency, will eventually force healthcare organizations to make social media a strategic priority.

“It is still very, very early. Hospitals have mission-critical IT needs [to address], so they won’t rush into this. But they are in the studying phase,” says Holt. “The issue, honestly, is that you can’t stop the world. The heat will be turned up in a year or two.”

— Elizabeth S. Roop is a Tampa, Fla.-based freelance writer specializing in healthcare and HIT.