The companies that set up and manage patient communities such as PatientsLikeMe, MyHealthTeams and HealthUnlocked bridge a gap between the perspective and voice of people who live with a condition and pharmaceutical companies developing treatments for those diseases. The biopharma industry wants the insight of patient experiences but is restricted by regulatory boundaries. Pharma and biotech companies, among others, have come to rely on the data they gain from working with these companies to inform clinical trial design as well as help them gain a better understanding of what truly improves the quality of life for these patient populations.
Philadelphia-based Health Union is one of those businesses. The first of the 12 patient communities it manages started in 2010 and focuses on migraine headaches. This year, it expects to grow to 17 and has moved into oncology for the first time with the launch of a lung cancer community in January. Health Union has plans to add seven to eight more oncology groups over the next 18 months, according to COO Lauren Lawhon. Among the groups it is planning to add this year are ParkinsonsDisease.net (April), SkinCancer.net (June), AtopicDermatitis.net (July), BladderCancer.net (October), and
Health Union has partnerships with more than 20 biopharmaceutical companies, including eight big pharma businesses.
Olivier Chateau and Tim Armand cofounded Health Union. Chateau, the CEO, worked in pharmaceutical marketing for several years and Armand, the president, worked for a big pharma business. I visited their offices on 12th and Sansom as the company hosted a forum for the patient advocate contributors that write for its patient communities, some of whom also serve as moderators for the ongoing discussions within them.
“There’s a perception that patient communities don’t have scale. We think of this as small niche opportunity but over time we reach a large number of patients,” said Armand. “It’s on a larger scale than people’s initial impressions.”
As you might expect, trust is a critical component of these communities, which combine first-person narratives from contributors, who are paid as independent contractors, and people who have a condition in common. They provide a forum for exchanging information on coping rheumatoid arthritis or lung cancer, for example, from diagnosis, treatments and their side effects, the emotional struggle of living with the disease, to the experience of taking part in a clinical trial. Contributors share posts that can take the form of essays to poetry. These kinds of interactions can reduce the social isolation and stress of managing these conditions.
The patient community network does periodic surveys of their members to improve the quality of interactions and get feedback for ways to enhance the overall experience. Health Union generates income from pharma companies by making some of the de-identified data from these surveys available to them. Customized market research, advertising and sponsored content also bring in revenue and over the years the cofounders say they have learned how to balance the needs of advertising with the needs of their subscribers.
Initially, the company didn’t display advertising in its communities at all, which made community members suspicious of how Health Union generated revenue. That’s just one of many items the company has learned over the years. One no go area for ads are pages in which contributor entries highlight the benefits or unpleasant experience of taking various drugs or treatments for their condition. Lawhon noted that it also doesn’t permit pharma companies to contact contributors.
“We measure the success of these communities not by the number of people we drive to the website but by the number who come back — 35 percent come back,” Chateau said. “In return, we give them opportunities to interact with other patients and participate in clinical trials.”
Tamara Haag, a contributor with rheumatoid arthritis, said she likes being in a position to make a difference for others with RA.
In addition to being a contributor, Haag also serves as a moderator for the RA community, which offers its own set of challenges in a space where no one has a monopoly on pain and suffering and raw emotions occasionally rise to the surface. Haag said her job is creating an environment where participants feel safe and she’s learned how to communicate more effectively both in the RA forum and her day job.
“Getting to have a perspective in a community where readers feel validated and supported is very fulfilling for me,” Haag said.
Photo: DrAfter123, Getty Images