The primary purpose of patient advocacy organizations is to provide the necessary resources and education to arm all patients as they grapple with disease. They also aspire to be the unifying voice of their collective patient community, but many organizations only touch a part of their disease community. This becomes an inevitable question as listening to the views and perspectives of constituents remains critical for all patient advocacy organizations to achieve their mission and vision.
To be able to achieve these goals and objectives, they must prioritize strategies to build, connect and engage with patient and caregiver communities. Health data technologies can support this work and help patient advocacy organizations deliver value to patients and their loved ones in times of crisis and need.
Learn about the challenges of engaging patients and caregivers
In addition to finding a cure, patient advocacy organizations aim to educate, advocate, and provide support services for patients and their caregivers. In order to build and mobilize communities, it is critical to understand the challenges faced in providing services and support to patients and their families.
Some of these barriers may include engaging diverse, hard-to-reach communities or underrepresented groups, reaching patients at diagnosis, and providing meaningful resources, value, and consistent engagement. In general, patient needs are quite different and there is no one size fits all. To address these challenges, key strategies must be utilized, such as:
- Build personal connections to foster community: Often for newly diagnosed patients, this can be the most vulnerable and scary time of their lives as they have to adjust to the new normal. It’s critical for advocacy groups to find stakeholders, staff, and volunteers who can help build personable and high-touch relationships to build communities of trust and engagement.
- Create a specific message: Understanding that each patient community has its own voice and needs is critical in building effective community engagement. The best way to understand this is to use research-based information and data. This helps ensure that information is not only clear and accurate for patients and caregivers, but is also tailored and resonated to their needs. This helps to amplify the patient’s voice and facilitate better engagement in a more effective manner.
- Addressing Appropriately Represented Populations for Disease and Underrepresented Groups: Ensuring representation and resources across the community is always a challenge for all patient advocacy groups. It can be difficult to engage diverse, hard-to-reach communities or underrepresented groups due to barriers to technology access, educational barriers, the need for a broader understanding of the role of patient advocacy, health equity dilemmas, and access issues. While there are no clear answers to these challenges, advocacy leaders must continually push to empower patients and caregivers, provide meaningful resources, and advocate and raise awareness of their specific disease areas.
Leveraging technology to improve community engagement and mobilization
Patient advocacy groups aim to provide information for patients and their caregivers. They also fill a valuable niche in the healthcare ecosystem by spearheading advocacy, investing in and supporting research efforts, participating in advocacy, developing health policy and providing financial assistance to help access critical medicines.
These organizations are an important resource for patients as they try to interact with healthcare providers, learn how to navigate their care journey, and save time in the doctor’s office. The critical role played by patient advocacy organizations also comes with multiple shared challenges of interacting with patients and caregivers. There are a variety of strategies and resources available to address these issues, such as the adoption of effective digital innovation and the use of health information technology.
Through the adoption of technology, patient organizations now have the opportunity to be more patient-centric than ever and understand what is happening in their communities. With health information technologies such as registries, patient advocacy organizations can provide value to patients and their caregivers through electronic communications, quickly capture opinion data to understand opinion and discover how to best engage with patients and help determine treatment options.
Using the registry to gather valuable patient insights and data from patients and caregivers enables better high-touch relationships and clear patient-reported outcomes. It also helps to help organizations achieve their goals and learn more about diseases and patients. This will ultimately improve outcomes and play a role in therapeutic discovery.
Building more comprehensive engagement for future patient organizations
Going forward, it is critical to understand the unique close relationship that patient advocacy organizations have with patients and caregivers, and the power that this relationship represents in research and treatment advancement as an integral healthcare partner and stakeholder.
Creating transparency and open feedback from the patient community helps improve the patient and field experience. Together with patient advocacy organizations, health technology creates tremendous opportunities to support patient engagement. However, much remains to be done to engage diverse and hard-to-reach communities. Building relationships that embody everyone in the patient advocacy organization is critical to gaining patient insights, connecting patients to survey sites, opening communications for future research needs, and improving quality of life and outcomes.
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