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.

Address challenges in engaging patients and caregivers

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:

• Taking a high-touch approach, with strong community engagement: One advocacy group executive described an approach with volunteer leaders and grassroots advocates in around 100 U.S. cities. Community volunteers connect the organization with newly diagnosed patients in need of support. Another panelist noted that stakeholders who need support are often at a very vulnerable point in their lives, so that high-touch, warm, personal connections and building long-term relationships are typically most helpful. This high-touch approach is ideal and highly effective. However, this is difficult to achieve at scale as organizations grow in size—and the decision on trade-offs is strategic, determining how deeply versus how broadly an organization can interact with its community.
• Tailoring messaging: A key element of community engagement is the sharing of high-quality evidence and research-based information in an appropriate voice for each constituent. One panelist described working with an academic institution and multiple other patient organizations to develop a common ‘track’ for all patients with a particular diagnosis. This starts with identifying the right team of physicians, followed by the right tests, the right treatments, and sharing of the patient’s data to advance understanding of the disease. This straightforward approach has driven simple, clear outreach messaging for patients and caregivers. It has also provided a focal point for high-touch, ongoing engagement following diagnosis. Over time, families become engaged with research, learning about policy and how to bring their voices to the fore in an effective way.
• Adopting effective digital innovations: A move into search engine optimization (SEO) several years back was described by one panelist as a helpful step forward, yielding a 64% increase in patient contacts through the organization’s website in the same year. Facebook advertising and other digital approaches have also been successful, to the point that today, 70% of the organization’s contacts come from digital sources. Google Ads (previously known as Google AdWords)—a pay-per-click platform that displays ads on the search engine’s results page—have also been used to extend outreach. Volunteer-moderated support groups have been used to scale up the help that has traditionally been offered to patients and families by phone helpdesks.
• Challenges reaching representative populations for the disease and underrepresented groups: A big issue most patient advocacy organizations face is fulfilling their desire to be a true resource to their entire community. Challenges include access to technology, education barriers, the need for broader awareness for the role of patient advocacy, among other pressing health equity and access issues. Session participants noted that supporting health equity and access for black, indigenous, and other people of color remains a challenge. While there is no ‘silver bullet’ for reaching these groups, panelists pointed out their desire to provide meaningful resources, advocacy, and empowerment to all those facing their particular disease.
• Listening proactively to the needs of all stakeholders is also vital, along with encouraging them to become empowered and take on leadership roles. This is key to advancing patient organizations’ missions to improve circumstances for future patients. Some organizations work with local partners that already have strong connections within target patient communities. Many advocacy groups continually to look for innovative approaches to scale their efforts to make sure that the individuals they engage are truly representative of the population with the disease.

Listen to and incorporate the views of the patient and caregiver communities

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:

• Careful listening is essential and there are multiple ways to do so effectively. Many organizations seek information through traditional sources such as input directly from patients and caregivers, from patient and survivor advisory boards, and from those on the organization’s staff.
• Robust research is another vehicle to fully understanding patient and community needs. Patient registries led by patient organizations have been very successful in garnering patient reported outcomes, experiences, and insights. Frequent online polls can be extremely helpful here, as well.
• Artificial intelligence also holds promise in crowdsourcing to analyze patient and caregiver comments in public chatrooms; one organization successfully used this approach to extract robust data on topics of importance based on 250,000 online comments. This approach also has promise in identifying clinical trial endpoints based on outcomes that are most important to patients. On a smaller scale, one organization reported surveying recently engaged patients and caregivers to understand their needs and viewpoints. 

Building an ideal relationship

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.

Using health information technology

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.

Conclusion

Key takeaways from the discussion on community building and mobilization included:

• Patient advocacy organizations share multiple common challenges in engaging patients and caregivers and can learn from one another’s experiences in achieving the most with finite resources.
• Listening to constituents’ viewpoints and perspectives remains vital for all patient organizations to fulfill their missions and visions. 
• Adoption of technologies provides opportunities for patient organizations to be increasingly patient centered and better informed about what is happening in their communities.
• Patient advocacy organizations have made major strides forward in providing value to patients and their caregivers through electronic communications to build on traditional in-person dialogue with patients and caregivers, and artificial intelligence/machine learning to capture viewpoints and understand perspectives. 
• Technology, specifically modern data registries, delivers a mechanism to collect invaluable patient insights while providing value back to patients and caregivers. This is also critical in helping to maintain close, high-touch relationships while scaling to accommodate the needs of larger organizations serving more patients and caregivers. 
• Patient advocacy organizations, through their uniquely close relationships with patients and caregivers, play a pivotal role in amplifying patient voices for broader healthcare advancement—ultimately leading to improved quality of life and outcomes for patients and their caregivers.