In Patient Advocacy,“Grassroots” Means Meeting People Face to Face

Healthcare has never been a trendsetter in digital and social domains. If there was glory in being first to the field, other industries snatched it before healthcare had a shot—beginning with IT, finance, media, and entertainment.

Perhaps healthcare took a leisurely tack because treating and comforting people who are sick is a quintessentially physical activity. Medical practitioners listen, look, and touch. Patients, for their part, are trained to expect and appreciate these physical ministrations.

Nevertheless, the signs of networked healthcare are all around us today. More than half a million people use the social network PatientsLikeMe to explore new treatment options, contact others with similar conditions, and even run ad hoc clinical studies. Digital, do-it-yourself health monitoring has also moved into high gear. Around the world, 50 million people are registered users of Fitbit, to name just one of many health-tracking devices and apps. And 96% of hospitals now use electronic health records, according to recent data.

Digital Health’s Boons and Risks

The onrush of digital health is hardly something to lament. But the trend comes with a risk that we may de-personalize, or over-digitize, some of the most crucial community-based institutions in modern medicine. I’m speaking of patient advocacy organizations, whose grassroots activities are central to healthcare communications.

Advocacy groups play many critical roles in our healthcare ecosystem, most of which are never glimpsed by people who aren’t sick. These organizations help educate, encourage, and comfort patients and their families, some of whom are terrified by the future that stretches ahead. They mobilize communities to lobby on behalf of disease-altering treatments, improve our policy environment with regard to disease management, and assist biopharma companies in recruiting patients in clinical trials.

Do advocacy organizations make use of digital and social technology? Absolutely. Many education campaigns and outreach programs by advocacy groups rely heavily on social media, as well as analytics to target appropriate audiences and measure results. But there are many junctures at which we must set these tools aside and make sure that patients and family members, advocates, caregivers, and other stakeholders meet one another and learn from one another—not at arms-length in digital domains, but face to face.

In-person Engagement Important to Mental Healthcare

The importance of in-person engagement is especially pronounced in the area of mental health. Earlier this year, we conducted in-depth research on patient access to psychiatric medicines and services. Despite federal and state laws requiring health insurers to cover mental illness treatments at “parity” with physical conditions, advocacy groups provided us with many examples where the system fails.

Across the U.S., patients with major depression, bipolar disorder, schizophrenia, and other severe illnesses complain that there are too few in-network psychiatrists in their health plans, and that they can’t afford high coinsurance on expensive new medications.

Before compiling the results of this research, published in a white paper titled “An Advocacy Rx for Progress in Mental Health,” we surveyed major health insurers to learn how some of the issues advocacy groups raised might be ameliorated. Payers acknowledged the problem of “network adequacy”—the chronic shortage of psychiatrists who accept health insurance—but were inclined to blame the fact that compensation levels are low in psychiatric care and few medical students are drawn to the field.

Mental health advocates, in contrast, say the problem lies with low reimbursement rates offered by health insurers. What surprised our team, as the conversations progressed, was the solution proposed by some of the payers. They said they would like to attend more meetings and special events where patients, advocates, care providers, and payers could sit together, exchange ideas, and learn about the constraints that affect each constituency.

Meeting Opportunities are Rare

Such occasions do arise, payers told us—although the opportunities are somewhat rare. “In face-to-face meetings at these events, we’re learning about the consequences of an illness from each individual perspective,” one payer said. (You can read the full report “Mental Health: An Insurance Industry Perspective.”)

Despite the tremendous allure of digital and social communications, the importance of face-to-face engagement in advocacy is too important to ignore. It’s partly for better mutual understanding. But there’s another reason we need more engagement in physical space, namely, to battle negative perceptions afflicting the pharma industry and its allies, including patients and physicians.

In recent years, pharma has become a lightning rod for criticism of high drug prices, largely because of egregious price hikes by a small number of “bad apples” in the industry. Some of the stigma attached to pharma, especially in the area of rare diseases, has begun to engulf advocacy as well.

This trend isn’t surprising. But it’s particularly troubling in rare diseases, where pharma companies rely heavily on advocacy groups to identify far-flung patient populations, document the natural histories of these complex illnesses, and recruit patients in clinical trials. These illnesses, defined as affecting fewer than 200,000 people, are overwhelmingly genetic in nature. That means about 80% of the conditions are diagnosed in children, a percentage of whom do not survive into their teens.

A Counter-Productive Trend

The counter-productive trend of stigmatizing of advocacy groups dedicated to saving sick children is fueled, unintentionally, by a scandal-conscious media. In March, the New England Journal of Medicine published a special report titled “Conflicts of Interest for Patient-Advocacy Organizations.” The authors, a team of medical ethicists at the University of Pennsylvania, examined 104 large advocacy organizations and found that 83% receive financial support from drug, device, and biotech companies.

The authors called for greater transparency regarding industry-advocacy ties, but missed an opportunity to describe the many social benefits that stream from industry-advocacy partnerships. Kaiser Health News and USA Today both ran stories on the research, but neither gave patients and their advocacy groups a chance to include their voices regarding the controversy.

There’s no question social media can counteract some of the lapses in technical journals and mainstream media. But as my colleague Dave Querry, President of Navicor, explained at a recent media roundtable, Twitter is no substitute for person-to-person conversations when the topic is as complicated as healthcare. Controversies in this industry often are heavily layered in technical details, which can’t be captured in headlines, short synopses in a Facebook news feed, or a photo caption on Instagram.

“There’s a movement within our society to work on snippets,” Dave said at the roundtable. “You’re seeing people react to headlines—but it’s not as simple as 140 characters.”

Lately, I’ve noticed a push within healthcare to leverage tools like Twitter, Facebook, and other social media to address profound challenges such as medication adherence. The idea is to remind patients to renew their prescriptions, not simply by a phone call or letter in the mail, but by a directed tweet, a Facebook message, and a symphony of other social media reminders.

Good healthcare communicators and their clients know that listening to patients and advocacy organizations is a critical piece of the job. inVentiv Health Communications’ Behavioral Insights Managing Director, Kathleen Starr, PhD, has written quite a lot about a practical engagement philosophy called “social centricity.” And the thesis flies in the face of the social media “symphony” approach I just described. In short, she finds social media is fine, but it’s no replacement for face to face.

Addressing Patient Needs at Home

Based on years of interviews with patients and practitioners, Kathleen has come to understand that the patients’ circumstances at home often shape their ability to comply with a prescription, a scheduled surgical procedure, or a preventive health regimen. “Maybe the patient has a sick child and is already devoting a sizeable portion of the monthly budget to pay for expensive medicines,” she explains. “If one prescription has to go, the parent will give up her own medication to provide drugs for her child.”

Practitioners can’t gather a complete picture of a patient’s complex home life by reading an occasional tweet. Knowledge comes from trust, which is earned through intimate and unhurried face-to-face encounters with the patient.

Kathleen has suggested physicians and advocacy groups could pool their expertise to create a short survey for patients—roughly five yes-or-no questions—to be filled in before an office visit. For the patient, the survey would require nothing more than checking a few boxes designed to reveal life-changing circumstances at home. Then, before or during the office visit, a nurse or doctor could ask a few follow-up questions—and it’s quite likely the answers would be relevant to both the diagnosis and the optimal course of treatment.

Such questionnaires could accomplish two important goals. First, they would elicit information about the patient’s context, such as:

  • A death in the family
  • A sick child
  • Job insecurity
  • Foreclosure on a home

Second, the interviews would demonstrate to the patient that the care providers genuinely care about what’s happening with the patient outside the doctor’s office.

In the absence of that nuanced knowledge—the socially centric context Kathleen has defined in her publications—a barrage of Facebook reminders to renew a prescription will come as an affront, rather than the patient-centric service marketers undoubtedly have in mind.

Twitter, Facebook, and other digitally driven transformations are so powerful and beguiling that it’s easy to forget the importance of meeting in the physical world. Yet this is the domain where grassroots advocacy organizations perform their most important work. And while social media is an extraordinary vehicle for broadcasting a message, it must not be allowed to eclipse the role of narrow-casting, face to face, and human being to human being.

  • Jeanine O'Kane

    Jeanine O’Kane is President, Public Relations Group at inVentiv Health Communications. Jeanine’s role at inVentiv Health Communications includes Biosector 2, Chamberlain Healthcare PR, and Chandler Chicco Agency. She has 20 years of business leadership experience in planning and implementing innovative marketing strategies for high-profile clients. Her broad experience includes branding, consumer and physician engagement, disease awareness, grassroots programming, clinical trial recruitment, data commercialization, and crisis communication.


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