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Activating Patient Experience in Clinical Development: New Roles for Patient Organizations
Jan 22, 2025
Throughout 2024, the IQVIA Institute for Human Data Science hosted a series of panel discussions to convene, engage, and empower the patient organization community. To date, we have shared key insights and takeaway from the first four discussions covering research collaborations, implementation of the Inflation Reduction Act (IRA), the changing oncology landscape, and patient experience challenges and successes.
This blog captures key moments from our fifth and final panel focused on patient-driven clinical development programs. I hosted the discussion, which featured Sarah Johnson, who leads Patient Advocacy for IQVIA in the EMEA region; Karen Mancera-Cuevas, Senior Director of Health Equity at National Health Council (NHC); Rick Thompson, CEO, and Eve Hewitt, Scientific Projects Manager, at Beacon for Rare Diseases; and James Zervios, VP and COO at the Obesity Action Coalition.
Seven ways to support patient-driven clinical development
Regulatory agencies around the globe continue to emphasize the need to integrate patient needs, priorities, and preferences into the drug development process. This trend has opened the door for patient organizations to take an expanded role in offering patient input into trial design and execution.
In our discussion, we wanted to explore how patient organizations are stepping up to seize these opportunities. At the beginning of the panel, I highlighted seven specific ways that patient organizations can co-create patient-driven clinical development programs—and invited panelists to share their perspectives on bringing them to life:
- Shaping clinical development program priorities and designs
- Helping to ensure that endpoints reflect patient priorities, needs, and experiences
- Designing protocols for positive patient experience
- Incorporating technology to reduce trial participant burden
- Developing diversity action plans for representative study populations
- Crafting “right place, right time, right way” support for patient trial enrollment
- Ensuring high-quality patient-study communications before, during, and after the trial
Building on common ground
Sarah emphasized the importance of building strong relationships among industry, regulators, contract research organizations (CROs), patient communities, and their representatives: patient organizations. These communities can be uniquely effective in bringing together all the relevant stakeholders and engaging patients as key collaborators.
Sarah noted that with patients and their families often raising funds for research, “no one wants these trials to succeed more than the patient communities.” She added that the real value of patient organizations is that convening power—and “the ability to keep everybody laser-focused on the ultimate goal: impact on the patient community.”
By staying engaged with patient organizations, CROs can build more effective trial strategies without compromising on the speed of progress. From a rare-disease perspective, Rick suggested that CROs are more likely to be trusted by all stakeholders: “CROs may not have a long-term relationship with an individual patient, but they do have long-term interest in doing patient engagement well in order to deliver a trial in the best way possible.”
’Multi-layered’ advocacy
Karen mentioned the surge in innovative partnerships between patient organizations and clinical trial programs. As examples, she cited the Asthma and Allergy Foundation of America and its collaborations with manufacturers of inhalers and other nasal sprays, as well as growing interest among drug developers in working with the Lupus Foundation of America. Karen noted that in executing these partnerships, leadership needs to be multi-layered. Within patient organizations, that should include commitment from the C-suite along with the grassroots efforts of patient advocates and patients themselves.
In reflecting on the work of the Obesity Action Coalition, James echoed Karen’s comments. When it comes to clinical trials, the organization has a dual focus: ensuring that people with obesity are included in all trials and advocating for participants in trials for obesity treatments. The advocacy work aims to ensure that trial sites are comfortable and welcoming, with appropriately sized chairs and blood pressure cuffs, as well as clinical staff who use “people first” language and demonstrate compassion and empathy. These efforts start with organizational leadership, but ultimately, the goal is to empower patients with obesity to be their own best advocates.
Opportunities to drive training and development
Rick pointed out that for the rarest diseases, there may be little to no research underway—and patient organizations can play an important role in amplifying patient requests for focus and investment. He concurred with the value of patient organizations stepping up early in the process of trial design to provide much-needed insight into patients’ experiences, beliefs, and preferences.
“For an ultra-rare disease, the patient community might include 100 people—or even tens of people—within a country,” he explained. And while these individuals offer tremendous depth of knowledge and experience about their disease, they may be inexperienced in interacting with the clinical development process.
“We need to see increased support, education, and guidance to help those individuals push forward and deliver impact across the spectrum,” Rick said. Rick’s colleague Eve mentioned that Beacon for Rare Diseases invests in training and development for patient groups, and she encouraged others in industry and academia to step up and help “to upskill the patients to have the right input and level of input” that sponsors and CROs are seeking.
Cases in point
Eve also provided a specific example: a multi-stakeholder meeting that Beacon for Rare Diseases recently hosted. The session brought leading academics in the field of rare bone disease together with relevant regulators, clinicians, and patients. In addition to formal updates on active studies, the meeting included informal discussions among researchers, clinicians, and patients. The insights shared led to an important breakthrough in terms of what patients value. While scientists have been laser-focused on addressing bone fragility, patients made it clear that pain and fatigue have the greatest negative impacts on their day-to-day quality of life.
“We regrouped with the clinicians about a month later, and it was as though a lightbulb had gone on,” she recalled. “We’re now working to change the narrative about the value of the trial to improve recruitment of potential participants.”
James shared that compounded versions of GLP-1 medications are making it more challenging to recruit patients for studies of obesity treatments. The Obesity Action Coalition is working to support recruitment by providing a free one-year membership to trial participants—a benefit that many choose to renew on their own. In the meantime, industry will likely face continued headwinds as patients encounter a barrage of marketing messages for compounded medications.
Final thoughts
I concluded the discussion by asking panelists for any final thoughts. What follows are some of the key takeaways:
- Intentionality is key for any organization with huge ambitions and limited resources. Look across the landscape, identify two or three areas of unmet need, and then devote the organization’s resources to making progress in those areas.
- Patient organizations offer unique insights that are increasingly essential for clinical development programs. Engage with sponsors and CROs from a place of confidence, with a focus on top priorities and goals.
- Patient organization leaders may want to look for opportunities to engage beyond the boundaries of patient communities—collaborating with public health departments, social service agencies, and communities at large.
- As the size of any patient organization grows, it’s important to stay attuned to what members are thinking and feeling. Simple surveys can provide valuable insights about their needs, including those related to clinical trials.
Patient organizations continue to play a vital role in clinical development—connecting scientists, clinicians, and patients on a shared quest for better treatments and health outcomes.
For more insights for and about patient advocacy organizations, click here.