Pharmaceutical companies have long turned to physicians to deliver key marketing messages to their colleagues, patients, and the public. These companies are now investing in patients who have gained trust and stature within a patient community. These patients speak as everyday people with medical conditions, as relatable as a friend from high school.

What Are Patient ‘Influencers?’

An industry niche of vendors who identify, vet, and maintain patient recruits has developed; WEGO Health, for example, boasts of “a network of over 100,000 Patient Leaders spanning virtually every health condition and interest area” who “have a profound influence on how others navigate their health and health care.”

Each of WEGO Health's "vetted network of top influencers" reach an average 15,000 followers every month. An article on WEGO Health’s website defines individuals with 1,000 to 100,000 social media followers as micro-influencers who "may have a recognizable, celebrity-like reputation within a specific niche." Not only are micro-influencers persuasive, they apparently come cheap: According to this article micro-influencers “are more cost-effective partners to work with, increasing the brands’ ability to and [sic] maximize ROI [return on investment]. …with micro-influencers, the opportunity is as real as the stories they have to tell.”

Most of WEGO Health customers are pharmaceutical companies, but they also cater to medical device manufacturers, hospitals, and insurers. Promoting what is known as disease awareness without naming a specific drug isn’t regulated as advertising, so companies historically haven't had to reveal their involvement or funding. Even if patient leaders wanted to disclose payments, WEGO Health’s terms of service include a comprehensive confidentiality clause that states that patients cannot disclose the identity of companies for whom they work.

Services provided by “patient leaders” include producing videos or other content, attending events, providing advice, and even recruiting patients for industry-funded clinical studies. FastCompany pointed to the example of Leanna Mullen, a patient leader in the Gaucher’s disease community. WEGO connected Mullen with BrandTrust, a research firm conducting a survey for a pharmaceutical company. Mullen received about 80 percent of WEGO Health’s $10,000 fee for recruiting patients to participate in the survey. Through her closed Facebook groups and private forums, normally off limits to industry, she completed recruitment in a matter of days.

The Profitability Of Patients

Accessing patient online communities that would otherwise be inaccessible is a powerful draw for drug manufacturers. WEGO Health “connects patient leaders with healthcare companies that can’t tackle patient engagement on their own” and partners “with patient leaders to co-create authentic content and execute engaging social media campaigns with a proven ability to move their peers from awareness to activation.” Under a banner that reads “Get Paid to Share Your Story”, WEGO Health’s website states, “You're not just a patient, you're the partner healthcare needs.”

WEGO Health takes a cut for identifying, structuring, and facilitating these interactions, which generates revenue between an estimated $3 and $10 million, and expected growth of 65 percent in 2018.

Besides brokering the services of the patient leaders, WEGO Health provides training and networking opportunities. An online resource launched in July 2019 offers patient leaders “a simple way to find opportunities to collaborate with healthcare organizations and to be compensated for their time and expertise.” WEGO Health’s network allows members “to complete expert-led courses designed to strengthen essential advocacy skills” and “offers secure access to paid opportunities with healthcare companies seeking to tap the insights and expertise of patient leaders.”

Murky Territory

On the WEGO Health website, a 2017 article by chronic pain patient Barby Ingle offers tips to other patient leaders on how to be a social media correspondent at a conference. The article and the recap of her work provide a rare glimpse of WEGO Health’s clients. Ingle describes the HealtheVoices Conference, “a groundbreaking leadership conference created exclusively for those using social platforms to advocate for themselves and their communities.” The conference was funded by Janssen, WEGO Health, and other entities and included sessions on how to be an effective policy advocate, Media 101, Facebook, video content, YouTube, and “Showing Your Expertise While Financially Supporting Your Advocacy .”

Ingle is one of WEGO Health’s experts and in her article she thanked WEGO Health, acknowledged Janssen’s sponsorship of the conference and thanked them for covering her travel expenses. In fact, all attendees had travel and expenses covered by Janssen.

What is so problematic about a company like WEGO giving patients remuneration for their time, willingness to tell their stories, and outreach to their patient communities? We believe these kinds of relationships have the potential to blur the lines between patients’ intentions and those of the people paying to amplify their voices.

Ingle is the president of the International Pain Foundation, (iPain), a patient advocacy group for individuals with chronic pain. She has more than 18,000 followers on Twitter, and defends the long-term use of opioids in chronic pain patients. On the iPain website, Ingle states, "The pain community and legislators need to ensure the patients in pain have appropriate access to care including opioid analgesics."

To be clear, no evidence supports the effectiveness of daily opioid use for chronic pain. Long-term opioids are the wrong treatment for chronic pain not only because of addiction risks but because people become tolerant to the drugs, often requiring more and more over time to treat their pain.

Nevertheless, after a judge in Oklahoma ordered Johnson & Johnson to pay $572 million for engaging in false and misleading marketing of opioids , Ingle wrote that the verdict was bad for pain patients. She also asked: "Why force these pharmaceutical companies into settlements? Why force an industry that saves millions of lives to do this? We need the industry to keep working on treatments…"

Of course, everyone has the right to argue their point of view. But if that point of view is being bolstered and broadcast by a corporate entity with its own incentives and allegiances – that fact ought to be transparent. Nowhere in her articles about the opioid suit does Ingle disclose that she has recently received payments from Johnson & Johnson’s subsidiaries and intermediaries like WEGO.

Ethical Concerns And Questions

Ingle’s case illustrates why these relationships are so fraught. As with doctors who become key opinion leaders, patients who engage with drug companies are doubtless chosen because they offer industry-friendly opinions. But if they never say something they didn't believe, what's the problem? One problem is that corporate support gives patients with industry-friendly views more visibility, allowing them to drown out opposing views. Another is that industry-aligned positions shared by patient leaders may be misleading and not based on evidence. A third problem is that for patient leaders, who have built their trusted communities without any outside resources, revenue from — and warm relationships with — industry may in fact influence what they believe, because the relationship reinforces industry-friendly opinions, creates the illusion of partnership, and lessens the chances that patients will adopt industry-critical stances.

One way that opioid manufacturers may use professional patients is to persuade legislators that these drugs are an appropriate and safe treatment for back pain, arthritis, and other common forms of chronic pain. That just isn't true. As momentum grows for limiting the use of opioids for chronic pain, the voices of patient leaders, amplified by their followers, are an invaluable industry tool for opposing any limits on the dose or duration of opioid use. Attacks on proposed legislative or regulatory limitations – or even clinical guidelines - as unwarranted and unjust are more palatable coming from patients than from industry.

There is no reason for media, legislators and policymakers to be suspicious of patients - when they have no acknowledged ties to industry. Professional patients – and the companies that pay them - do not have to disclose payments. Industry does have to disclose payments to physicians, which enabled researchers to determine that financial ties with industry change physicians' prescribing behavior. One county-by-county analysis found that pharmaceutical marketing payments to physicians were associated with opioid overdose.

Could financial ties of professional patients also cause harm? That question cannot be studied without access to information about payments to patients, and there is currently no mechanism for disclosing industry payments to individual patients. It took a 2018 Senate report to expose the millions of dollars channeled to advocacy organizations and professional societies by opioid manufacturers. No law requires advocacy groups or the companies that fund them to disclose payments.

Looking Ahead

Regulators, legislators, policymakers, and media should demand disclosures of ties to industry and industry vendors from patients and patient organizations that weigh in on any issues. Most importantly, pharmaceutical and other biomedical companies should be legally compelled to disclose all payments to patients and patient advocacy organizations. Financial conflicts of interest among patients and patient advocacy organizations are as important as conflicts of interest among health care providers and professional organizations. Patients may overtake physicians as pharma’s best business partners. Transparency is a minimum standard for assessing whose views should carry most weight in public health debates.

Author's Note: Dr. Fugh-Berman is a paid expert witness in litigation regarding pharmaceutical and medical device marketing practices.