Even a few years ago, the arrival of a pharma-affiliated individual into an online patient or caretaker community would prompt a strong response. It might be chilliness, criticism or silent exodus — but it wouldn’t be welcoming.

Pharma, in turn, respected the long-established boundaries. As Acorda Therapeutics CEO Ron Cohen put it nearly a decade ago, “When I grew up in the industry, things were pretty well set in terms of how pharmaceutical companies engaged with patients: You didn’t.”

In the last few years, though, there have been signs of a thaw. Where industry people were once treated as uninvited party guests, they’re now embraced — if warily — for the knowledge and access they can provide.

So, what has changed? And, more importantly, what has prompted the changes? To answer those questions, it’s essential to first take a look at the three groups that have fueled the move toward greater community engagement.

As community spaces have evolved, with old-school message boards and chat rooms bolstered by social media platforms and influencer communities, so, too, have the patients populating them. Many, unsurprisingly, have developed a sophisticated knowledge of drug and device development and commercialization.

However, that experience is hard-won, as resource-strapped leaders are often forced to wear many hats at once. Parvathy Krishnan, executive director and founder of the Krishnan Family Foundation, offers an example: “The onus is on you to educate, drive research funding and convince venture capitalists and pharma organizations. Then at the same time, a family is calling you for help because their child was just diagnosed and there’s no one in their country specialized to care for them.”

Meanwhile, as Health Union SVP, community development Sara Hayes notes, the pandemic introduced most people to the status quo for most disabled and immunocompromised people. “Missing birthdays and holidays; worrying about what could go wrong with outings … for many who had never been in that position, the pandemic was eye-opening,” she explains. “People who hadn’t had to rely on online engagement before recognized its value. It was a new common ground.”

Regulators have also influenced the move toward online community engagement. Previously removed from the communities impacted by their decisions, they have started to seek out community members for input and advice.

In 2023, the Food and Drug Administration debuted its Patient-Focused Drug Development Guidance Series. Its purpose: to help organizations “collect and use robust and meaningful patient and caregiver input.” The year prior, the agency published Patient Engagement in the Design and Conduct of Medical Device Clinical Studies, which noted that “more patient-centric device clinical studies may lead to improved efficiency and quality [and] greater uptake.”

Finally, as the blockbuster drug model gave way to a focus on rare conditions (and the smaller populations affected by them), marketers realized that mass-media appeals to patients aren’t especially cost-effective. As they sought out more targeted ways to find and engage these smaller groups, condition-specific patient communities became an obvious venue for engagement.

As for the tactics and approaches that work best, respect is at the heart of every successful engagement between industry marketers and patient communities. “You have to focus on how you can contribute, participate and add value,” explains Jack DeManche, director of digital strategy at Precisioneffect. “It’s about being respectful and not transactional.”

Hayes agrees: “The industry has talked about KOLs forever, but they’ve always been physicians. No one knows more about living with a condition than a patient.” To that end, Health Union partnered last year with the Society for Participatory Medicine to create the Patient Leaders Certification Program. Its goal is to help patient leaders responsibly navigate the space and focus their efforts. 

It’s similarly important to get in the door early. Ella Balasa, a patient advocate who has cystic fibrosis, has sought to advise companies in the earliest stages of trial design. She notes that one of her colleagues worked with a venture-capital firm on investment decisions — which is about as early-stage as it gets. 

Indeed, community engagement demands quick and decisive action. “Think about tomorrow today,” DeManche says. “Often in pharma everyone wants to hang back and hesitate, but doing this is setting yourself up for failure.”

“You can’t develop a community relationship with the same speed you might be able to implement an ad campaign. Organic takes time,” he adds.

DeManche also warns company-side people not to try too hard to engage with community members. “You may be one of tens of thousands of companies trying to get their attention. If you reach them by working with their community, it’s at a moment when they’re already in that specific space with that specific mindset.”

Expectations have similarly shifted. In 2020, a Boston Consulting Group/AstraZeneca survey found that “patients, HCPs and patient advisory groups seem to be quite pragmatic about what companies should be doing for patients. The three most important attributes are ‘commits to affordable access,’ ‘trials reflect real world and outcomes that matter to patients’ and ‘provides transparent information.’” A more recent study of 13 patient organization representatives found that they seek “positive, tangible and useful outcomes.”

However, Hayes notes that clear objectives and follow-up are often lacking in patient involvement. “When patients participate, they want to know what happened, whether it’s a clinical trial, market research or a survey,” she explains. “There’s an assumption that everyday people don’t care, but they do — people are very interested in knowing what happened as a result of their participation. Doing this helps encourage the patient to stay involved in your work.”

DeManche agrees, stressing that “retention is cheaper than acquisition.”

For her part, Balasa would like to see more ROI-centric breakdowns of patient-engagement initiatives. “I’m not sure whether the industry thinks patients don’t want to talk about bottom-line value, but patients are also professionals who understand business. We’d like to see the ROI, and it would demonstrate that this is more than a nice-to-do,” she says.

While we’re on the topic of value and ROI, community-minded advocates believe that patient KOLs should be compensated for their time and expertise. Krishnan notes that advocacy organizations often operate on tight budgets and their leaders have to juggle complex and costly medical caregiving logistics in order to, say, speak at an event.

We’re not talking millions upon millions here. “The biggest ROI is most likely in sponsoring community events. You might not even need to be there — just your name will tell the community that you want to support them,” Krishnan says.

DeManche recalls a patient community that lacked funding for T-shirts designed to brand and promote a regional series of events. It took a mere $5,000 investment to get the program back on track — and give participants an item with lasting branding.

Such creative approaches resonate online and off. The American Cancer Society developed a grant program to raise funds in a way that allowed donors to allocate their matched donations to specific community initiatives. The initiative let community members more directly influence the projects upon which the agency would focus.

On the other hand, Hayes’ team recently worked with a company that hoped to work with real patients in order to train call-center employees. Who better to prepare a company’s staff to be as helpful as possible? Other organizations hailed for their commitment to working with patient communities include Travere Therapeutics (which backs working groups for advocacy and DE&I), Ultragenyx (which stages the RARE Entrepreneur Bootcamp) and Bristol Myers Squibb (coordinator of Global Patient Week).

“Get your community involved in your choices,” DeManche says.

Smarty Social GM Stephanie Theodoropoulos recalls a situation in which the company that manufactured a newly approved medical device became aware of a powerfully active private Facebook community populated by members of its target audience. Rather than invade the private space, the Smarty team asked the community moderator whether there might be interest in co-creating a Facebook Live event.

Patient KOLs, the moderator and a brand representative ultimately discussed the device in a session that Theodoropoulos described as both personal and professional — and one that all parties found very productive.

“It was well-executed because we all believed in each other,” she adds. “The openness of this group isn’t unique.”

That’s why she stresses all such industry/community collaborations must be built on a foundation of thorough preparation and genuine partnership. Smarty played its part by creating a detailed architecture of the event and providing the community with tech support and creative assets.

Patients want to be asked to weigh in on such matters, Krishnan notes. “Thinking outside the box is another thing that patients can help with. We’ve become good at it.”

Indeed, Hayes lauds the “great shift” in involving patients and ensuring their voices are heard.

“Patient voice is becoming part of day-to-day operations and patients’ lived experience is being valued more,” she adds. “Of course, it could be better. There’s more to do.”

“But when the right people come together,” Krishnan adds, “it’s magic.”