August 13, 2012

Share the Health
By Julie Knudson
For The Record
Vol. 24 No. 15 P. 14

With an all-for-one, one-for-all spirit, online patient communities are creating fellowships to boost disease management.

In central Ohio, Tania Moon uses online patient technologies powered by the Collaborative Chronic Care Network (C3N) Project and ImproveCareNow to help her son understand and cope with the symptoms of irritable bowel disease (IBD). “Through the network, we’ve shared his story with other families as well as healthcare professionals,” Moon says.

Not only has her family’s experience been helpful to other patients and providers within ImproveCareNow, a collaborative chronic care network, but her son has welcomed the opportunity to increase his own knowledge with the help of fellow IBD sufferers, and it’s all thanks to an online community.

The patients who participate in such online groups often come in one of several varieties, according to Michael Seid, PhD, a professor of pediatrics and director of health outcomes and quality of care research in the division of pulmonary medicine and core faculty in the Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center. “They are the people who are highly engaged, empowered, educated, and linked in,” he says, referring to the group of über-connected users, increasingly known as “e-patients,” who are generally knowledgeable and very active within their online communities.

Seid says another demographic are people with rare conditions—sometimes so rare that their physicians may not have seen another case in their entire careers. The Internet offers these patients the opportunity to connect with others around the world who share and understand their situation.

A third group, likely comprising a good chunk of community participants, is at a specific point in the patient journey, says Seid, who is also a coprincipal investigator with C3N. They are often new patients just starting to discover the kinds of resources and information available in an effort to better understand what they need to know. Others are looking for insight into treatment protocols and symptom management. “Then you have patients who are sort of transitioning from one phase of their condition to another,” Seid says. “If things are worsening, or sometimes even when they’re getting better, they tend to engage more.”

Dana Lewis, an interactive marketing specialist at Seattle’s Swedish Medical Center, offers a dual perspective on how social media and other online resources fit into the healthcare landscape. As a person with type 1 diabetes and celiac disease, Lewis sees online communities and social media tools from both a provider’s and a patient’s point of view. “What I see is not just the opportunity for better clinical management of disease but also the emotional support available online to patients,” she explains.

The input she receives from others who are dealing with similar issues has been valuable in her journey as a patient. It’s the type of support not typically available from a doctor, a fact that is “occasionally overlooked by the traditional healthcare system,” she notes.

Swedish Medical Center leverages several social media tools, including Twitter and Facebook feeds along with a blog written by their providers, and part of Lewis’ role is to help connect patients with these online resources. “I really do see a growing role of providers to have an understanding of these online communities and tools so they can point them out to patients and say, ‘Look, in addition to researching this information, you might find information or support here online.’”

It’s clear these online communities and the resources they provide aren’t just beneficial to patients. Providers have something to gain, too. Moon has tried hard not just to share her son’s story but to bring other patients and their parents in to “get their input and ideas and get them to be more proactive.” The ImproveCareNow network of pediatric gastroenterology practices, which has partnered with the C3N Project, has shared information such as patient materials with community members with the purpose of soliciting input.

Patients and their families have also given feedback on how things can be improved on a day-to-day basis and have even evaluated where changes might be implemented within the hospital setting. “When you run into a bump in the road as a patient, it helps you provide that input,” Moon says. “Transparency between families and providers is a new area for many of us. It can feel uncomfortable in the beginning, but when you see the changes that can be made based on feedback, it begins to feel more comfortable.” Overall, Moon says the interactions between patients and providers have been very positive.

What’s Shared?
In a study conducted by Pew Research, 80% of adult Internet users reported they had looked online for information about a healthcare topic, ranging from specific medical problems to health insurance issues and end-of-life decisions. Andrea Scott, director of community and content at Denver-based WellTok, Inc, a social network developer that helps population managers engage consumer populations, says patients often turn to social media and online tools because of confusion about who they should contact next, how they can obtain treatment, and what their expectations should be going forward.

Internet sources are increasingly available to help answer those questions. The ability to share information without revealing too many personal details, often a feature of online tools, including patient forums and social media platforms, may help make users more comfortable talking openly about their struggles and observations. “Because we have an anonymity factor, people are more likely to share their own experiences,” Scott says when describing WellTok’s CaféWell community.

Patient-driven online communities are changing how patients learn about disease, symptoms, and treatments. “The main thing this technology enables is a way of aggregating patient experience in a meaningful way,” says Seid, who contends this is something the current healthcare system doesn’t do very well.

As patient communities connect with clinician communities and as the view of healthcare evolves into a collaborative effort instead of simply as “a sort of transaction, a service to be given,” Seid says the relationships between patients and providers are fostering more productive interactions. Patients are connecting with the people and the data they need “to work together to solve the problems that are important to them and to identify the right treatments and how to actually manage the disease in the best way.”

Patients who participate in online communities frequently start out by looking for baseline information along the lines of “what happens next,” Scott says. “One of the biggest things I think is actually learning how to navigate through the entire healthcare system.” Much of what Scott sees shared between community members falls into the “experiential point of view,” with patients sharing their own experiences as a way to help others. Based on their personal trials and results, patients might offer provider referrals, suggestions for lifestyle and nutrition changes, and feedback on medication side effects.

Betsy Weaver, EdD, founder, CEO, and president of UbiCare, which offers healthcare providers integrated communication solutions through e-mail, social media, text, and Web, believes our increasingly busy lives make the need for supportive online interactions even more acute. “The more isolated we are from people who have similar problems, the harder it is to cope,” she says.

Weaver likens online communities to discussing diseases and issues in “a more informal, over-the-fence way,” a scenario that provides patients with greater opportunity to speak with someone else who has already been through the experience. Patients may not be comfortable asking their physicians for specific information, whether it’s regarding treatment plans or how symptoms may affect their daily lives. Online peer-to-peer sharing may offer another way to get the information they want. “We need the power to ask and question and be able to be advocates for ourselves,” Weaver says.

The emergence of online patient-focused communities has meant that people “don’t have to be a part of an established, closed off, fenced-in patient community to be a part of it,” says Lewis, who points to Twitter users who can leverage the technology without joining other specific groups. “By virtue of looking for a hashtag or following a couple of key patients, they can still tap into that knowledge and that community,” she says, and all at a time and place of the individual’s choosing. Patients can maintain touch points to their peers as well as find as much or as little support and resources as they like.

What the Future Holds
As the parent of a child with chronic IBD, Moon finds the promise of online communities to be fascinating. “One of the coolest things for me as a mom is to see the potential that the C3N Project and ImproveCareNow have to transform healthcare with a chronic disease such as this,” she says. Moon is involved in ImproveCareNow’s Parent Working Group, a team that provides input and direction on the project’s work to both ImproveCareNow and the C3N Project.

As she and her son continue to review communications and other material for the community, she says, “It’s exciting to see the things that are coming and that they’re developing that can help transform care.”

The ways that online patient communities—whether they’re sponsored by a healthcare provider or a network of providers or are run by the patients themselves—will affect the long-term healthcare landscape are still evolving, and how much change actually sticks is yet to be seen.

Seid believes the impact on healthcare moving forward will be profound, citing a couple of trends that will have particular impact on patients as well as providers. “The patient communities are starting to become more sophisticated in terms of educating and empowering patients to take a more active role in the management of their disease,” he says. Couple that empowerment with the increasing knowledge bases these patients are creating for themselves and their physicians, and Seid says a growing culture of patient-provider collaboration is forming. It’s a scenario he says will “enable a new way of creating care.”

A strengthening of the alignment between patients and providers is likely to be one result of greater online engagement, explains Jeff Cohen, cofounder and vice president of product strategy at WellTok. “It’s really changing a lot of the traditional ways providers and health plans interact with their patients and their members,” he says.

Online tools are now being used to drive behavior change, make the communication process easier, and deliver information to patients at the right time and in the right places. “I think these online patient communities and social networks are definitely catalysts for change and improvement in the industry,” Cohen says.

Patient communities are already having an impact on the availability of information, which is leading to a new dynamic between patients and providers. “For physicians to know that patients are out there getting this information, it really changes their perspective on their care provider relationship and the fact they’re not the gatekeepers of information like they would have been 50 years ago,” says Lewis, who believes this realization will further encourage providers to identify better ways to make educational and other resources available online in a way that supplements the tools already offered through patient communities.

Better access to educational materials may inspire more patients to self-manage their health, a prospect that could have huge ramifications throughout the healthcare system. “I think that’s very powerful for both patients as well as healthcare organizations,” Lewis says.

Vibrant online communities are changing the healthcare game, Weaver says, in part because they develop much savvier patients who can use their knowledge to become more active and effective partners in their own care. “In that sense, it has the short-term and long-term impacts of saving a tremendous amount of time, money, and effort,” she says.

However, for those opportunities to be fully realized, Weaver says it’s critical that a thoughtful balance be found between the type and the quality of information patients receive through peer-to-peer sharing and the knowledge received through their care providers. She says this parity will allow patients to “make sure they’re getting the straight skinny” and arm them with the right information to move forward.

Cohen believes future innovations could bring entirely new sets of data into the online realm. Today’s smartphone applications may eventually be joined by other devices such as “scales, blood pressure meters, glucose monitors—all kinds of devices that might transmit information wirelessly,” he says. What will the landscape look like when those bits of intelligence are shared and accessible online? Cohen isn’t entirely sure but says, “I think we’re definitely at a crossroads.”

And while he’s quick to add that numerous privacy and security issues surrounding the storage and transmittal of these data must be hammered out, he believes the opportunities for greater engagement between patients and providers are continuing to evolve.

— Julie Knudson is a freelance business writer based in Seattle.