Patient and caretaker communities were once off-limits to industry insiders. The rules of engagement have changed.
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.”
Source:- mmm-online.com/home/channel/features/tight-knit-patient