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Digital CPR: E-Patient to E-Patient

January 31st, 2012 Stead Burwell Guest Post

Stead Burwell is a Chief Executive Officer of Alliance Health Networks. Since 2006, Mr. Burwell has been working with Alliance Health to help its founder, Geoff Swindle, build and strategically grow its business. Mr. Burwell has worked with startups in several different capacities as an operating executive, founder, venture board member and angel investor.

When Lana Barhum awoke one day unable to walk or use her hands, she knew something was wrong.

Later, when she received diagnoses of rheumatoid arthritis and fibromyalgia, conditions that in many ways still puzzle doctors, she turned to the Internet for more information and began blogging her tips for how to live successfully despite the pain. She also joined Arthritis Connect, an online social network, where she could learn from and share information with others with arthritis.

“Arthritis can be a lonely condition and support is an essential part of living despite our limitations,” said Barhum, now an advocate and mentor on the site. “The best people to connect with are those who understand your everyday struggles.”

The Internet provides people like Lana access to health information and specialists. But increasingly it has also opened up a space for connecting with others who share similar conditions, through blogging and social networking.

The Pew Research Center recently found that one in five Americans have gone online to find people with similar health concerns. For people with chronic illnesses, it’s one in four. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But with more than 46 percent of patients saying they turn to their friends, family and other patients for day-to-day advice, social networking is clearly filling a need.

Studies show online support groups foster positive health outcomes, including escalating good, healthy habits. People are much more likely to achieve their health goals when paired-up with others who have similar goals. Healthy habits, such as eating right, sharing best practices and exercising, can truly go viral if the proper networks are established for the right information to be passed on.

Case in point: The Center for Connected Health released a study showing how social networks benefited patients with psoriasis, a common skin condition that causes skin redness and irritation. Nearly half of the participants reported an improvement in their quality of life after joining the online support site and 40 percent reported improvement with the severity of their psoriasis.

Social networking has created an outlet for patients and caregivers to put aside their reservations and ask important questions they probably wouldn’t ask in person. Social networks enable patients to open up and empower themselves to cope with their conditions through mutual support, ultimately leading to better lives.

Not all social networks are created equal

Not every social network is an appropriate venue for patient networking. The very nature of popular networks such as Facebook and Twitter provide a public stage to share personal information. However, patients may be (and should be) wary about sharing very sensitive and personal information on such sites. Although people can find emotional support on mainstream social networks, they can unintentionally invite unnecessary comments. A large, public forum means patients are less likely to post important or personal health questions.

At Alliance Health Networks, we aim to empower patients by making it easy to start conversations with other patients in the same situation. With more than 50 disease-specific social networks, like Arthritis Connect where Barhum participates, Alliance Health offers a variety of features that allow members to explore health and wellness topics on their own terms, share treatment experiences and post product recommendations. The resulting support and camaraderie help empower community members living with a chronic illness, and ideally improves their quality of life.

We have partnered with Tufts University School of Medicine to examine how utilization of disease-specific online social networks differs by condition, including levels of member engagement, attitudes toward using technologies for disease management and the value of online social support. We’re excited to see the results of the study and determine how members on our various social networks engage with one another so we can better tailor our communities to fit their needs.

Health care providers joining the online conversation

Recognizing that online communities are becoming more popular and rapidly growing, many of the largest and most respected health organizations and institutions are looking for ways to engage patients online.

Mayo Clinic, a leading nonprofit organization in medical care, research and education, is a trailblazer in this space. With nearly 300,000 followers on Twitter and close to 70,000 connections on Facebook, the organization recognized a growing need to provide an outlet for patients to engage one another. In July 2011, Mayo Clinic launched a social network for current and prospective patients, which now has some 13,000 registered users and continues to grow. This network allows patients to talk about their conditions, share their experience at the Mayo Clinic, post questions and provide encouragement to other patients exploring treatment options.

Joslin Diabetes Center, the world’s leading diabetes research and clinical care organization, recently started actively participating on Alliance Health Networks’ Diabetic Connect (www.diabeticconnect.com), the largest online community focused specifically on diabetes. Diabetic Connect’s 670,000 members have direct access to Joslin medical experts, including diabetes educators, endocrinologists and clinicians, and can follow blog posts, ask the expert questions and track other topics of interest. Additionally, we are working together to develop other diabetes management tools, including interactive online classes. The first of the series will be “Monitoring Matters,” consisting of interactive tutorials that will be hosted on the Diabetic Connect and Joslin website.

The future of connected health

It’s easy to see the movement of health services transferring online. As empowered patients continue to scour the Internet for information and look for ways to connect with peers managing similar conditions, the role of tailored, private social networks will become increasingly relevant. People have always come together to share health-related support and advice – now, they can do it at Internet speed and scale.

 

Stead Burwell is a Chief Executive Officer of Alliance Health Networks. Since 2006, Mr. Burwell has been working with Alliance Health to help its founder, Geoff Swindle, build and strategically grow its business. Mr. Burwell has worked with startups in several different capacities as an operating executive, founder, venture board member and angel investor. Previously, Mr. Burwell was the catalyst behind Pinger, a Kleiner Perkins funded startup in the consumer voice space. Before that, as Interim CEO for Venafi, an early stage startup company, Mr. Burwell built the early management team and oversaw the closing of initial customers including several Fortune 100 customers. Previously, Mr. Burwell was a technology investor at UV Partners, an early stage venture capital firm based in Salt Lake City that also invested in the healthcare sector. Mr. Burwell was also an equity research analyst at Lehman Brothers covering the Internet sector in the late 90s.

A recognized thought leader in consumer online health, Mr. Burwell has been an invited speaker at the Health 2.0 Conference, the Symposium for Connected Health at Harvard Medical School, and the National Summit on Personalized Healthcare. For the past 4 years, he has served on the State of Utah’s Air Quality Board helping to manage and monitor the State’s air quality programs and policies. Mr. Burwell is a graduate of the University of Virginia where he later received his MBA.

Stead Burwell

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