September 26, 2022

Patient advocacy organizations’ main purpose is to provide the resources and education needed to arm all patients as they are navigating a disease. They additionally aspire to be the united voice for their collective patient community, but many organizations are only touching a percentage of their disease community. This becomes a consequential problem since listening to the viewpoints and perspectives of constituents remains vital for all patient advocacy organizations to fulfill their missions and visions.

To be able to meet these purposes and goals, they must prioritize strategies that build, connect and engage their patient and caregiver communities. Health data technology can support this effort and help patient advocacy organizations provide value to patients and their loved ones in a time of crisis and need.

Understanding the challenges in engaging patients and caregivers

Outside of finding a cure, the goal of patient advocacy organizations is to educate, advocate for and provide support services to patients and their caregivers. In order to build and mobilize a community, it is vital to understand the challenges faced when serving and supporting patients and their families.

Some of these hurdles may include engaging diverse, hard-to-reach communities or underrepresented groups, reaching patients at the point of diagnosis, and providing meaningful resources, value and consistent engagement. In general, patient needs are different across the board and not one size fits them all. To address these challenges, it is essential to leverage key strategies such as:

  • Building a personal connection to foster community: Often for newly diagnosed patients, this can be the most vulnerable and scary time in their lives where they must adapt to a new normal. It is critical for advocacy groups to find stakeholders, staff and volunteers who can help build personable and high-touch relationships to create trust and an interactive community.
  • Creating specific messaging: When it comes to creating effective community engagement, it is vital to understand that every patient community has its own voice and needs. The best way to understand this is by leveraging research-based information and data. This helps ensure that not only is the messaging clear and accurate for patients and caregivers, but also that it is tailored to their needs and resonates. This helps amplify the patient’s voice and foster better engagement in a more productive way.
  • Addressing proper representative populations for the disease and underrepresented groups: For all patient advocacy groups, it is always a challenge to ensure there is representation and resources for the community as a whole. It can be very difficult to engage diverse, hard-to-reach communities or underrepresented groups due to obstacles surrounding access to technology, education barriers, the need for broader awareness of the role of patient advocacy, health equity dilemmas and access issues. Although there is no clear-cut answer to address these challenges, it is crucial for advocacy leaders to continually push to empower patients and caregivers, supply meaningful resources, and advocate and grow awareness for their specific disease areas.

Leveraging technology to improve community engagement and mobilization

Patient advocacy organizations operate to provide patients and their caregivers with information. They also fill a valuable niche in the healthcare ecosystem by spearheading awareness, investing in and enabling research efforts, engaging in advocacy, shaping health policy and providing financial aid to help access critical medications.

These organizations are a critical resource for patients when trying to engage their healthcare providers, understand how to navigate their care journey and save time in a doctor’s office. The crucial role patient advocacy organizations play also comes with multiple shared challenges in engaging patients and caregivers. There are a variety of strategies and resources that can be used to tackle these issues, such as adopting effective digital innovation and leveraging health information technology.

Through the adoption of technologies, there is now an opportunity for patient organizations to be more patient-centric and informed about what is happening in their communities than ever before. With health information technology such as registries, patient advocacy organizations can provide value to patients and their caregivers through electronic communications, quickly capture data on viewpoints to understand perspectives and discover how to best engage with patients and help identify treatment options.

Using registries to collect invaluable patient insights and data from patients and caregivers creates better high-touch relationships and garners clear patient reported outcomes. It also aids in helping organizations achieve their goals and learn more about the disease and patient. This ultimately improves outcomes and plays a role in therapeutic discoveries.

Building a more holistic engagement for future patient organizations

Looking forward, it is critical to understand the uniquely close relationships patient advocacy organizations have with patients and caregivers—and the power that relationship represents as an indispensable healthcare partner and stakeholder in research and therapeutics advancements moving forward.

Creating transparency and open feedback from patient communities can help to improve both patient and site experiences. Alongside patient advocacy organizations, health technology has created a huge opportunity to support patient engagement. However, there is still tons of work to be done in engaging diverse and hard-to-reach communities. Creating relationships that embody everyone in patient advocacy organizations is vital to gaining patient insights, connecting patients to investigative sites, and opening communications for future study needs, while also improving quality of life and outcomes.

Photo: Warchi, Getty Images