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Patient power


Technology amplifies the patient voice in advocacy groups

Feature

By Jan Bowers, Contributing Writer, February 1, 2022

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In the early 20th century, when a diagnosis of cancer almost inevitably led to death, a group of 10 physicians and five laypeople launched the American Society for the Control of Cancer — later to become the American Cancer Society (ACS). A key goal was to dispel the fear, denial, and secrecy that often accompanied a cancer diagnosis by disseminating information about the disease in popular magazines and scientific journals. On the eve of World War II, the National Foundation for Infantile Paralysis (now known as the March of Dimes) capitalized on the public awareness of Franklin D. Roosevelt’s battle with polio and, through a network of local chapters, came to the aid of patients and families grappling with the disease and raised funds for research.

More than a century after the founding of the ACS, patient advocacy groups have been formed around hundreds of disorders ranging from rare diseases to conditions that afflict millions of Americans. The Academy lists 23 dermatology-related groups on the patient advocacy section of its website. In addition to educating the public and raising funds, the dermatology groups track and advocate on state and federal legislation, individually and in partnership with the AADA and the Coalition of Skin Diseases (CSD). They work with patients to navigate barriers to obtaining the therapies they need, help them enroll in clinical trials, and provide opportunities to connect with other patients and their families.

Two trends underlying these efforts have driven the evolution of patient advocacy groups in recent years: the growth of online resources, particularly social media, and an increased focus on listening to patients — how their disease impacts their lives, and the gaps between what they need and what the health care system provides.

The “lived experience”

The National Eczema Association (NEA) has, throughout its history, dedicated itself to the concerns of patients, but “social media has allowed us to really listen to and understand the true patient perspective,” said President and Chief Executive Officer Julie Block. “It’s outside of the clinical setting and often very raw and unfiltered.” For October’s National Eczema Month theme, “This Is My Eczema,” NEA reached out to patients through Facebook and Instagram, inviting them to share their stories and experiences with eczema. “We developed a video featuring members of our community talking about what their lives are like. But it doesn’t just sit on our website anymore; we’re no longer in the days of ‘build it and they will come,’” Block said. “We can put that video out on all the social channels, then follow up on a post that a community member might make with information about the disease, so that people are being educated and they’re also not feeling so alone.” 

Surveys have long been a mainstay of understanding the patient perspective, but NEA has taken it a step further with an app called EczemaWise. “The app allows people to not only track and manage their eczema, and work with their physician in a collaborative arena, but it also allows us to capture data on the back end that expresses the true lived experience of the patient: how treatments are working, are people sleeping, has their quality of life improved — the things that matter to patients.” 

“Social media has allowed us to really listen to and understand the true patient perspective.”

Although its members are dermatologists, not patients, the AAD has recently started bringing patients into scientific sessions at its meetings. “Patients are on the stage at a number of sessions, giving their real-life experiences,” said Moise L. Levy, MD, FAAD, chair of the Academy’s Patient Advocate Task Force. “It’s been extremely effective, because as we all learn at some point in health care, it’s all about the patient. We must address the patient’s concerns beyond the medical condition they’re seeing us for.” Dr. Levy, who is professor of pediatrics and medicine at Dell Medical School at the University of Texas at Austin, said the patients’ participation is well received by the dermatologist audience, even when the patients explain where they feel the physician encounter is lacking. “They say that we’re often paying too much attention to the medical problem at hand, and not the emotional and behavioral impact of the condition,” said Dr. Levy. “For me, as a pediatric dermatologist, it’s not just the impact on the child but on the parent and siblings too. Because some of the kids I see with complex skin issues need a lot of day-to-day attention, and siblings don’t always handle that well.” The task force met late last year to craft a motion urging members to focus more on the patient’s personal issues that will be presented to the Academy Board of Directors for consideration and approval, Dr. Levy said. “In my world, that’s as important, if not more important, than the medical condition.” 

Tech-powered advocacy

The National Psoriasis Foundation (NPF) has advocated for patients at the state and federal level for most of its 50-plus years of existence, said Leah Howard, JD, the foundation’s interim chief executive officer. “[In advocacy] we used to employ what we called a shoe-leather approach, where individuals impacted by psoriatic disease would truck to Washington to share their concern with their elected officials. If they couldn’t travel, they would write a letter to the official and drop it in the mail.” Face-to-face meetings are still a critical component of advocacy: the AADA and the CSD coordinate an annual day to lobby legislators in Washington, D.C. — bringing patients from a variety of advocacy groups to Capitol Hill to explain the impact a piece of legislation might have on their lives. Many groups also meet independently with federal and state legislators. But when the COVID pandemic precluded in-person events, patient groups turned to virtual conferencing to continue their advocacy efforts. One of the benefits of that switch, Howard pointed out, is that “it allowed some members of our community with psoriatic arthritis, for whom walking around the Hill for a day is too draining, to be able to do advocacy from home. It also enabled thousands more to participate at home through social media, amplifying the impact of our messaging.” Block also noted that “in many states, technology has enabled virtual testimony, and more clinical experts are now able to participate because they don’t have to leave their practice for a day or two.”

Complementing in-person or virtual meetings with legislators are advocacy groups’ ongoing efforts to harness the power of their membership as they attempt to influence legislation through social media campaigns and targeted emails. Advocacy software platforms such as Salsa Engage and One Click Politics “make it really easy to send out alerts to patients in a particular state and say, ‘please send a letter to your senator,’” said Kelly Barta, president of the Coalition of Skin Diseases. “All they have to do is click and enter their address, which pulls up their senators and representative. There’s an email already written, you just sign your name and send it off.” The NPF uses a similar platform, VoterVoice, to streamline its advocacy efforts, said Howard. “NPF members can sign up for action alerts through the platform and receive updates on specific issues, sample messages to elected officials, and notification of advocacy events in their state. Step therapy is a big one that we’ve been working on for the last six or so years, and in that period, we’ve had, I believe, close to 30 pieces of state legislation passed.” Barta also cited prior authorization, copay accumulator programs, surprise billing, and non-medical switching as key issues targeted by advocacy groups. Social media platforms like Twitter and Instagram can greatly amplify the patient’s voice in the legislative process, said Block. “We’ve found that certain policymakers or their staff have personal connections to eczema and our world, and some are very candid in responding to our tweets that tag them. Making those connections with our legislators is more apparent and visible.”


AAD patient advocacy resources

The AAD is one of 25 member organizations of the Coalition of Skin Diseases, whose mission is to advocate on behalf of individuals with skin diseases. On this AAD webpage, members can access a wealth of advocacy and patient education resources, including current, in-depth information regarding the Academy advocacy priorities, such as access to compounded medications and scope of practice and truth in advertising.

Other features include:

Patient education

  • How to select a dermatologist

  • Recognizing and managing common skin diseases and conditions

  • 9 things to try when acne won’t clear

  • How to care for your baby’s skin, hair, and nails (video)

Prior authorization resources

  • Video and podcast outlining best practices in managing prior authorizations

  • Prior authorization policy changes related to COVID-19

  • Prior authorization appeal tool

  • Troubleshooting card for patients

Drug pricing and availability

  • Links to GoodRx, NeedyMeds, RxAssist, and the Medicine Assistance Tool

  • A tool to help members determine if they can compound a drug based on FDA rules

Step therapy legislation

  • Map of the U.S. showing which states have passed step therapy laws

  • Summary of step therapy laws in various states

Connecting patients to resources, research

Many patient advocacy groups have a plethora of resources and toolkits on their websites to provide basic information about a disorder, help patients find a provider, obtain insurance coverage for costly medications, and identify clinical trials in their area. The NPF provides dedicated support to the biologic coordinators on practice staff, as well as to psoriasis patients whose physicians have prescribed biologic therapy. For the coordinators, “We offer tools like template letters to insurers, videos and podcasts about communicating with patients and insurers, and best practices,” Howard explained. In addition to providing assistance with insurers, a team of four “patient navigators” respond to patients’ challenges on any aspect of coping with psoriasis via phone, email, or text chat.

Larger organizations like NEA and the NPF typically provide extensive information and guidance for patients who are interested in participating in clinical trials. NPF offers a program called My Studies which allows patients to sign up for notification about trials starting in their area. NEA recently conducted a survey to better understand patients’ barriers to participation, Block said. “That information can be published in peer-reviewed journals, and be amplified for the whole community — our pharma partners, the CRO companies, clinical trial sites — to learn more about what patients need in a clinical trial; what would incentivize their participation, what are their fears, etc.”

“We’ve found that certain policymakers or their staff have personal connections to eczema and our world, and some are very candid in responding to our tweets that tag them.”

For smaller groups, providing patients with critical information and resources poses more of a challenge. Amit G. Pandya, MD, FAAD, serves as president of the Global Vitiligo Foundation (GVF). “This is a nascent foundation that has not been well funded thus far,” he noted. “It’s basically a group of dedicated physicians and individuals with vitiligo trying in the very few minutes that they have every week to run a foundation, and so it has not captured what its potential can be. As we contact more individuals with vitiligo through our outreach efforts, and as several new medications are being developed by the pharmaceutical industry, we expect more donations to come in and our funding to improve” he noted. While the GVF has a wealth of information for patients on its website, Dr. Pandya, who is a dermatologist at Palo Alto Medical Foundation and clinical professor of dermatology at the University of Texas Southwestern Medical Center, said he hopes to have “a more robust social media presence for the GVF, like some of the other larger skin disease-related foundations.” 

In the meantime, Dr. Pandya and other physicians active in the GVF participate in patient-focused events held by a for-profit patient support organization, MyHealthTeams. Since its founding in 2012, the company has launched social networks around 41 different conditions, including vitiligo (MyVitiligoTeam), psoriasis, eczema, hyperhidrosis, and hidradenitis suppurativa. A medical expert panel of specialists (including Dr. Pandya) “conduct live and recorded Q&As with our members, contribute to our videos and articles, and approve any medical content we research and share,” said cofounder and CEO Eric Peacock. Participation is free to patients; the company’s revenue comes from partnerships with pharmaceutical, insurance, and other health care-related firms. At a recent two-hour webinar hosted on MyVitiligoTeam, Dr. Pandya moderated a panel of research leaders of four companies that are conducting clinical trials for their vitiligo therapies, “and then [Peacock] interviewed two patients who have been through a clinical trial.” Dr. Pandya added that only vitiligo patients and their loved ones can sign up on MyVitiligoTeam, to ensure patients can express themselves freely. “They don’t want the patients to feel like their doctors are monitoring what they’re saying about them.”

The social network: A double-edged sword

Facebook, Instagram, Twitter, TikTok, and other social media channels have a critical role to play in affording patients a place to meet each other, find information, and share their stories, say the advocacy group leaders. But, not surprisingly, misinformation is rampant on social media, and the organizations walk a fine line between trying to correct the most egregious statements and avoiding the perception that they’re “policing the internet.”

Barta, who served as the president of the International Topical Steroid Awareness Network (ITSAN), said that “being able to connect on an online platform is a lifesaver for so many people because they can see others going through the same ordeal, compare notes, and just support one another. There are a lot of closed Facebook groups where people can share pictures and feel safe.” The flip side is that “there can be a plethora of crazy information out there, especially around treatment — information that could steer people in the wrong direction or even be potentially harmful.” When moderating for ITSAN’s private Facebook group, Barta reports, “if we saw anyone pushing medical advice, or behaving in a way that was disparaging to others, they would be warned and/or blocked from the group. Posts, in which patients asked questions, were an opportunity to direct people to resources that provided evidence-based information, but there are private groups that are formed just by patients, and in these groups, many times, members are free to discuss whatever they want without oversight.”

The NPF maintains its own social media accounts, including a Facebook page, for the national organization but does not maintain a message board or online group, Howard said. Instead, “we have an official community partner, Kopa, which is a platform that connects patients with each other, in addition to providing innovative digital health tools like symptom and stress trackers. There are also a number of individuals who have also started both open and closed Facebook groups.” The abundance of misinformation online “is certainly something we spend a lot of time thinking about,” Howard said. “I’m always pleased when I see, on social media, someone who’s speaking incorrectly about psoriasis, and someone else steps in and says, ‘have you contacted the NPF?’ That’s reassuring because we are not in a position to police the internet.” NEA has a public Facebook page and a closed page available to people who attend NEA’s annual Eczema Expo, said Block. “There are other closed Facebook groups, some of which people have graciously allowed me to join. I don’t comment; it is not our role to judge or evaluate what patients want to engage in to treat or manage their disease. As we listen and potentially see misinformation, then we say, ‘this needs our attention,’ and we will engage a variety of experts who put out information and education.”

The GVF maintains an informal partnership with about 20 local and regional vitiligo support groups, a few of which have a powerful social media presence, said Dr. Pandya. “There’s Facebook banter that goes back and forth, and anyone who wants to interact with someone who has vitiligo can join one of these groups.”

On balance, social media platforms provide an essential benefit to patients who too frequently feel isolated by their condition, said the group leaders. Social media influencers thrive in the world of skin disorders, just as they do in music, beauty, and home improvement, said Barta. “‘Skinfluencers’ might have a following of 15,000 people or more on Instagram. They can step in and offer encouragement when followers are feeling low or don’t know where to turn. During these past couple of years, with the weight of a pandemic exacerbating chronic health conditions, many patients are feeling like they are losing the strength to continue. By their candid nature and being open about of living with a skin condition, these social influencers let others know that they have value and that there are places where they can find not only community, but answers.”

Additional Dermatology World Resources

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