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Blog
Addressing Challenges In Engaging Patients And Caregivers
Jan 13, 2023
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. At our first Patient Advocacy Summit, one of the sessions delved into strategies that help address these challenges. Read for the points that came out of the discussion with three advocacy organizations, Global Parents for Eczema Research, the Pancreatic Cancer Action Network, and UsAgainstAlzheimer’s, along with experts from IQVIA.
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 the 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.
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 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.
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.
To read more from this session, download our whitepaper:
“Building and Mobilizing Your Community whitepaper”