The 2021 Patient Advocacy Summit, held on December 1, 2021, focused on Helping Nonprofit Organizations Support Patients through Advocacy-Led Research and Data Initiatives.1 Organized by the IQVIA Institute in conjunction with IQVIA Healthcare Solutions, the Summit convened more than 100 participants from patient organizations and foundations. Topics of discussion included best practices for patient-driven research and health data topics, and innovative ways to empower patient organizations.
One focus group brought together participants from three advocacy organizations—Global Parents for Eczema Research, the Pancreatic Cancer Action Network, and UsAgainstAlzheimer’s—with experts from IQVIA. The group discussed community building and mobilization, including experience in growing and engaging primary constituents while addressing the challenges faced in serving and supporting patients and their families.
Patient organizations face significant challenges in growing and engaging their patient communities, such as reaching patients at the point of diagnosis, engaging diverse and hard-to-reach communities, and connecting with those who are focused more on their immediate healthcare needs than on research. Strategies that have helped address these challenges include:
Beyond finding a cure, the purpose of patient advocacy organizations is to represent and give a voice to the patient. The patient voice is crucial to therapeutic development that benefits all diseases. This places patient advocacy organizations in an indispensable role critical to the healthcare system. It can be particularly challenging to collect, synthesize, and incorporate the views of patient and caregiver communities. Learnings in this area include:
In a discussion about the ideal relationship between the patient and caregiver and the advocacy organization, one panelist highlighted the need to be embedded in the patient community, with parents and patients on staff, and close relationships with leaders in the disease community. This eases the process of identifying exactly how each program will serve the community, informing an ongoing process of tailoring and course-correcting according to current needs.
A peer-to-peer mentoring program providing psychosocial support was very useful in building strong relationships—but demand exceeded the number of mentors available. The program is being redesigned to achieve greater scale through technology and group sessions with multiple mentees per mentor.
Before health information technology was widely available, one organization designed its own tool to allow patients to find a care team; this organization also has a clinical trials database to help patients identify suitable studies, and a patient registry. This helps balance the desire for high-touch relationships with an ability to scale services and continue broader engagement and—with appropriate permissions and privacy protection—to advance research. In an advocacy organization with 15,000 new patient interactions each year, there is great potential to inform registries and other approaches to research.
Another organization described the launch of a website that tailors disease information to each step of the patient journey and offers tips on prevention. The website incorporates machine learning from the results of a standard questionnaire to help advise on when an individual should consult their doctor. To date, 150,000 people have completed the questionnaire; the data have not yet been captured formally. This will be a key step to feedback information of value to the participants and help keep them engaged.
Key takeaways from the discussion on community building and mobilization included:
Global Parents for Eczema Research (GPER)
Global Parents for Eczema Research (GPER) was formed by two different parents of children with eczema in 2015.2 Both parents had struggled with finding evidence-based information to guide medical decisions and a lack of safe, long-term treatment options to manage the chronic condition. At that time, there had been no significant new treatments developed for children with eczema in decades. GPER is a virtual organization with patient and caregiver members representing five different continents and 17 countries. The organization is run by staff who have directly encountered eczema, including lived experience and science/research expertise:
GPER works in three areas, research, policy, and support. Patient-centered research is the organization’s primary focus, with the goal of improving quality of life and reducing suffering for children with moderate to severe eczema and their families. Dissemination of evidence to families worldwide is also a high priority. One outlet for this dissemination is a parent-led podcast where leading researchers are interviewed. In the policy realm, GPER advocates for patients to be included in policy decisions. The organization aims to drive structural changes worldwide to improve eczema care, and to accelerate the development and marketing of treatments. GPER also offers psychosocial support and peer-to-peer mentoring for parents in response to research indicating that many families struggle to meet the demands of managing eczema.
The Pancreatic Cancer Action Network (PanCAN)
The Pancreatic Cancer Action Network (PanCAN) was the first organization dedicated to fighting pancreatic cancer in a comprehensive way, and over more than two decades, has grown into a nationwide movement tackling the disease from all angles:3
UsAgainstAlzheimer’s
UsAgainstAlzheimer’s exists to conquer Alzheimer’s disease. The organization takes on the toughest problems; brings all of “Us” together to break down barriers; advocates for research that will speed treatments to market; and drives changes that matter most to people living with the disease.
UsAgainstAlzheimer’s will not rest until brain-span equals lifespan—for everyone.4 This organization focuses on a highly prevalent disease, and one that disproportionately affects women, African Americans and Latinx populations. This is an area with a constellation patient organizations. UsAgainstAlzheimer’s aims to bring constituents together to:
Major successes to date have been in gaining increased federal funding for the National Institute on Aging, which receives most federal funding for Alzheimer’s disease; and the fact that the federal government recently used data from UsAgainstAlzheimer’s to justify locating a new Alzheimer’s research center in a south Texas area with a large Latinx population.
Participants
Korey Capozza, MPH, Founder and Executive Director, Global Parents for Eczema Research
Sarah Johnson, Head of Patient Advocacy, EMEA Strategic Operations Europe, Middle East, Africa, and South Asia, IQVIA
Donna Manross, VP Scientific and Medical Affairs, Pancreatic Cancer Action Network (PanCAN)
Russ Paulsen, Chief Operating Officer, UsAgainstAlzheimer’s
Alexandra Weiss, Director, Strategic Operations Patient Advocacy, US Healthcare Solutions, IQVIA
References
1 IQVIA Institute Research Highlights
2 Global Parents for Eczema Research