Written on Tuesday 14th February 2023
It seems so stunningly obvious: Those working to develop new medical treatments should consult with patients who are affected by the health condition they intend to treat.
After all, patients are the true experts. They know how their medical condition affects daily life and functioning. They know the pros and cons of available treatments, and they are acutely aware of unmet needs.
But for years, biopharmaceutical development typically happened in laboratories and clinics with little to no patient input—until patient enrollment in clinical trials. The dearth of patient input, thankfully, is changing as industry and patient advocacy groups realize the benefits of collaboration between the patient community and pharmaceutical companies.
“The shift towards thinking about patient-centered drug development accelerated in 2012 when the FDA began their patient-focused drug development (PFDD) initiative,” says Mandy Rohrig, associate director of patient advocacy for BridgeBio, a biotechnology company designing transformative medicines for patients with genetic diseases and cancers with clear genetic drivers. “Industry especially realized how informative and valuable patients’ and families’ perspectives and experiences are at all stages of the drug development process.”
Establishing productive interprofessional collaborations requires deliberate intent, goodwill and transparency. Use these three pillars of effective patient-pharma collaboration to guide your efforts:
Engage patient advocacy groups sooner rather than later. The right time for pharmaceutical companies to connect with patients is before developing clinical trial protocols, not after, says Dina Matos, executive director of CARES Foundation, an organization working to improve the lives of individuals living with congenital adrenal hyperplasia.
“We’ve had instances where companies were starting to recruit patients for clinical trials and it became apparent that they didn’t think through what some of the challenges would be for patients,” Matos says. “This can result in prospective research subjects being discouraged from participating in research that is critical to their future well-being.”
Engaging patients early—and often—ultimately saves time and money. Patients can alert researchers to practical and logistical challenges and share how disease conditions and treatments affect their quality of life. And when companies consider patient input throughout the ideation and implementation stages of product development, they can create products and processes that respect patients’ time, experiences and expertise.
Patient groups and advocacy organizations have specific goals. So do pharmaceutical companies. Ultimately, patient-pharma collaborations are most effective when industry and advocacy partners identify and focus on shared goals, which may include finding a cure or improving quality of life.
Inviting members of the patient community to sit down with industry representatives gives people in both camps the opportunity to describe their experiences and identify mutual goals. Such meetings can also build trust, as some patients and families believe pharmaceutical companies are “money-hungry” entities that prioritize profits over people, says Alex Dubois, vice president for patient engagement with The CM Group, an OPEN Health company, and a CARES Foundation board member.
“Personal connections help individuals see that the people who are working on developing treatments really have a passion for this work, for helping people,” she says. “Around a table, we can listen and learn from one another.”
Focusing on shared goals will help the patient community and pharmaceutical partners identify specific opportunities to work together throughout all stages of drug development.
Patient groups and pharmaceutical companies must invest time and energy into creating sincere connections. It takes time to establish trust.
In-person meetings are one way to create connections. Lab visits are another great idea, as many people working in the laboratory rarely get to interact with patients, and most patients have never met a researcher.
Members of CARES Foundation have visited the BridgeBio lab, with visitors and researchers declaring it time well-spent. Those interactions help patients and scientists recognize their shared humanity.
You can also strengthen connections by supporting the activities of your advocacy partner. “We participate in activities alongside the patient community,” says Rohrig, of BridgeBio. “When CARES Foundation hosts community events, we attend.” She encourages other companies to do the same. “It is meaningful for the company and the community when all colleagues can engage—not just advocacy liaisons, but also leadership and scientists working on the potential treatment.” Sincere connections and engagement between patient communities and pharmaceutical partners can foster efficiencies and innovative solutions. That’s a “win-win,” Rohrig says. “When the community is engaged, it’s a win for both of us.”
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