Facilitating a dialogue between patients and pharmaceutical companies can not only help the patients feel heard but also improve pharma marketing and product development.

That’s according to Jack Barrette, chief innovation officer at Health Union, which maintains 33 condition-specific online communities. Barrette discussed the advantages of connecting patients and the life sciences industry at a session during the HLTH conference’s patient engagement track hosted by MedCity News on Oct. 17. Arundhati Parmar, MedCity News editor-in-chief, moderated the session.

Over the past 10 years, the notion of keeping patients and the pharma industry separate has shifted.

“Pharma plus patients was bad,” Barrette said. “It was like — big bad pharma, patients shouldn’t mix with them.”

But patients want to be a part of the conversation so they can impact the decisions being made that affect their health. Companies like Health Union, which recently bought WEGO Health, a company founded by Barrette, act as liaisons between patients and pharma companies.

Being involved in the conversation about their health has obvious benefits for patients. For one thing, they are able to assist with designing clinical trials and ensure that the factors that disqualify participants aren’t so sweeping that participation becomes limited.

Further, patients can help drive the decentralization of clinical trials, which involves using telehealth and other remote care tools to conduct the trials.

“When we talk to our patient communities at Health Union, they are enthusiastic about participating [in clinical trials] but not enthusiastic about going to a health center that is 200 miles away…travel becomes a big issue in so many cases,” Barrette said.

Ultimately, engaging with patients benefits the companies as well.

“The idea of engaging patients as equal peer participants on teams within pharma companies has really changed how the [companies] see the world,” Barrette said. “At the same time, influencer marketing has grown so quickly and the adoption of patients as collaborators [involved in] creating the marketing messages…has really improved the efficacy of those. So, in pharma speak, [there] are more effective advertising vehicles when patients are helping to create them.”

But it is important for patient leaders to maintain the trust of the communities they advocate for when working with pharma companies.

How can they achieve this?

“The short answer is transparency,” Barrette said. “There can be no attempt whatsoever to say this is just the patient speaking on their own behalf and quietly the pharma company is mentioned.”

Any content created by patient advocates and pharma companies together must clearly state the sponsorship, he added.

Photo: Gerasimov174, Getty Images