Do you know how to find the "best ear/nose/throat surgeon in the world"? Or maybe you wish to know where "appointment over-scheduling" kept a sick, elderly man in the waiting room too long. Look no further than The HealthcareScoop™ where patients tell you-and the rest of the world-exactly what they think.

Healthcare-specific social media sites are hugely popular, and your patients may be praising-or complaining about-their experience at your facility, without anyone at your health system knowing what is being said.

Hospital leaders can ignore the cacophony or learn to use social media sites as tools for improving their patients' experiences. "They are the way of the future," says Lee Aase, manager for syndication and social media at Mayo Clinic.

A Growing Phenomenon

Since The HealthcareScoop was launched in late 2007 in the Minnesota market, it has grown to include more than 1,000 personal stories, covering at least 600 healthcare topics. More than on 320 clinics, hospitals, and healthcare organizations have been discussed by name, as well as some 400 physicians and healthcare professionals from across the nation.

The Scoop is one of several sites created to encourage patients to share their healthcare experiences with one another. Another site: PatientsLikeMe™ includes 16 separate communities for patients with specific health conditions, such as HIV and fibromyalgia.

The goal of these sites: to empower patients by providing access to information that might improve their health. While much of the content is clinical, with patients sharing information about symptoms, treatments, and research for a specific condition, the discussions often lead to recommendations for or against certain providers.

"Every aspect of health care certainly has been covered, and that does not just mean hospitals and clinics. There are health plans in there, too," says MaryAnn Stump, senior vice president and chief innovation officer at Blue Cross and Blue Shield of Minnesota. "What it offers consumers is a blank piece of paper to share their story in whatever detail that they want to."

Stump is also president for Consumer Aware, a Minnesota Blues affiliate that founded The HealthcareScoop. The site was created after the company's consumer research showed that patients wanted different kinds of information-for example, personal experiences from patients who faced their own healthcare decisions-than physicians and hospitals can typically provide. The research also revealed that patients trust other patients to give the "full scoop" more than a healthcare professional who has not personally experienced the medical condition.

At first glance, The HealthcareScoop, PatientsLikeMe, and similar sites look like amateurish blogs featuring ungrammatical rants and raves with poor spelling and a lack of understanding about the way the healthcare system works. On second glance, the sites appear to be the key to the future of healthcare delivery.

In fact, Stump believes social media sites hold "transformational potential" for America's healthcare industry. "How do we redesign the healthcare system around the opportunities that manifest themselves through these stories of patient experience? We all know what we're doing isn't working," she says.

By design, the sites offer patients' unfiltered perspective on their experiences, the kind of information that every business executive should want to know. That is why Aase and others at Mayo embrace social media and monitor patient sites to see what is being said about their system.

"We have different people looking at different sites, and we have some services that highlight blogs and other material that's out there," he says. "We don't have an exhaustive view, but we are working on it."

The main purpose of such monitoring is to know the general tone of what Mayo patients are saying. But Aase does wish to pursue some individual situations because he does not want any patient to have a bad experience in his system. "If we come across someone who's got a concern, we are trying to refer that to somebody who might be able to help," he says.

How to Control Your Hospital's Reputation

In today's information-rich society, the only way to have a good reputation is to do a good job and never stop getting better. There is no way to control what patients say about your hospital on an Internet site or anyplace else.

That said, most providers would be cheered to see what their patients are saying. Stump says positive reviews at The Healthcare Scoop outnumber negative remarks by more than 3:1. Savvy hospital leaders use those negative remarks to identify processes that need improvement, she says.

"That's what becomes valuable from the standpoint of not just hospital CFOs, but CEOs and physicians as well," she says. "How are you going to distinguish yourself? How are you going to meet patients where they are at in terms of improving the patient experience within your environment? How do you use this information so that not only do you survive in the marketplace, but you thrive in the marketplace?"

Following the standards used by other leading social media sites, The HealthcareScoop has a code of conduct for its users and screens patient stories for profanity, but it does not censor patients' messages. The site includes entries that no hospital leader would want to read, including headlines that say "stay away from" a specific hospital. Similarly, physicians are called out by name by patients who are both thrilled and devastated by their healthcare experiences.

On the flip side, social media sites may provide opportunities to enhance your hospital's visibility or reputation, although not according to traditional marketing methods. Aase says providers who try to use a patient networking site as a marketing tool will lose credibility fast.

"These really are places where people are gathering; it's sort of like the patient's club," he says. "If providers were to go in there and overtly promote themselves, I don't think that would sit very well."

However,  when Mayo officials learned that a Yahoo discussion group devoted to Long QT syndrome prompted a California couple to bring their son to Mayo, Aase followed up to learn more. Today, that child's mother can be seen in a YouTube video, produced by Mayo, telling her frustrating search for the appropriate care and how she learned of a respected specialist at Mayo.

Making Social Media Work for You

Mayo is seizing opportunities to use social media to advance its focus on patient-centered care. Some of the system's cardiovascular patients are participating in a patient advisory group, One Voice, that has its own secret (not visible to nonmembers) Facebook group.

"It's only open to those who have been invited to be part of this virtual focus group, and it is a place they are able to share their reactions to different ideas and to share their experiences," says Aase.

Mayo has also organized a Facebook group to connect its patients who have amyotrophic lateral sclerosis and their caregivers. Aase describes that as a traditional support group that includes a Mayo provider.

"We're looking at how this might help us improve the care that we give, and also help patients support each other," he says.

At The HealthcareScoop, Stump sees physicians and hospitals wanting to be able to connect with patients via new media. The site recently started accepting "profile pages," accessible from the HealthcareScoop home page, that allow physicians, hospitals, and other providers to highlight stories that patients have posted about their services, share their own perspectives, and provide links to their own web sites.

Stump believes providers, payers, and policymakers can use the patient perspectives shared on social media sites to create the patient-centered focus essential to the transformation of the healthcare industry.

"Medicine is an art and a science," she says. "This (patient information) gives us ideas as to how the art can be improved just as patient volume numbers, infection rate numbers, and things like that give us a glimpse into how the science can be improved."


Why Do Online Health Information Seekers Use the Internet to Connect with Others?

  • 36% want to see what other consumers say about a medication or treatment
  • 31% research other consumers' knowledge and experiences
  • 27% want to learn skills or get education that helps them manage a condition
  • 17% are seeking emotional support
  • 15% want to build awareness around a disease or cause
  • 14% want to share their knowledge of and experiences with a medication or  treatment
  • 14% want to share their knowledge or and experience with a health issue
  • 13% want to find consumers' recommendations and opinions about hospitals and  other treatment options
  • 10% are looking to find consumers' recommendations and opinions about doctors
  • 8% want to feel that they belong to a group or community

Source: California HealthCare Foundation, 2008.

Publication Date: Thursday, January 01, 2009