Why Patient Registries Need to Make the Move From Tactical to Strategic Research Initiatives

Due to the challenge of human data entry, patient registries have had to be highly tactical – creating precise research questions and only gathering patient data to answer said questions. This approach has made the relationship between the organizations and patients feel cold and transactional and has limited the potential scope of research findings. However, data quality measures and technological advancements are opening the door for patient organizations to be more strategic. Instead of creating research initiatives around the usable data available, registries can access data to answer any given question. While this provides more flexibility, it adds more responsibility to registries to ensure they engage with and provide value to the patients.

Patient value reciprocity: Giving as much as you get

Traditional registries have taken a more one-sided approach to interactions with patients, requesting their involvement in the effort to achieve long-term goals without offering additional benefits that have immediate impacts. However, that’s no longer a sustainable model for meaningful, long-term engagement with patients that will, in turn, benefit the entire healthcare ecosystem.

Alexandra Weiss

To create a reciprocal relationship with patients, registries must identify ways to increase the value they provide, including patient dashboards where patients can track their disease history. But it doesn’t have to stop there. Features can be added to dashboards that allow patients to compare their disease and treatment journeys to others in the community. 

Additionally, modern technology opens the door to providing patients with solutions to challenges that have plagued the U.S. healthcare system, such as the communication gap between patients and their providers. When living with rare and chronic diseases, doctor appointments can be complex conversations to navigate, even for the most well-versed patient. Some of the complexity is also due to the gaps in information providers face when the patient is participating in research outside of the office setting. 

This new approach to registries can help bridge that gap by providing pre-visit documents, which include medical information from the patient’s research participation. These documents cam help drive more productive clinical visits and reduce the burden on providers. 

Addressing health disparities and social determinants of health

The pandemic has highlighted the need to prioritize the health disparities that have existed in our healthcare system for centuries. In order to make meaningful progress that will benefit patients today, patient organizations must identify more effective ways to advocate for underrepresented patients. One of the most significant issues to consider is social determinants of health and how those factors play a role in access and inclusion in clinical care and research. These factors include the home environment (e.g., internet and cellular data access that is needed to use online tools), economic stability (e.g., sufficient income, access to childcare and/or transportation), and social inequities (e.g., cultural competency of providers, immigration status, and discrimination). 

For many people, the desire to participate is there. But the realities of what participation requires are a hurdle that can’t be overcome unless the system meets the patient where they are at, instead of the other way around.

Registries have a unique opportunity to turn the wheels of change through their close interactions with the community of patients they represent. When you look at patients as people instead of research subjects, you can look beyond what’s vital for research outcomes alone and see what is actually preventing people from engaging in their healthcare.

From there, registries can differentiate equity across different processes and outcomes and how that’s tied to socioeconomics and ancestry. 

Looking ahead: How the role of patient organizations will evolve

The coming years will be critical for shifting the power towards the patient and, by extension, to patient organizations. This shift will help create fundamental change in the relationship between patients and organizations, as well as providers and researchers.

Modern patient advocacy organizations are more sophisticated and knowledgeable than ever. Through access to more in-depth data and an increase in interoperability, the ability to strengthen their relationship with the patient and caregiver community and change how research is done will be unparalleled. 

While this capability brings new responsibilities to patient organizations, they have a significant opportunity to play a more prominent role in the research ecosystem, acting as the trusted mediator between industry stakeholders.

When the goals of providers, researchers, industry, educators, advocates, and regulators become aligned, and every patient is represented, the advancements in disease knowledge, treatments, and clinical care will reach what were once unthinkable heights. 

Alexandra Weiss is director of strategic operations, patient advocacy for IQVIA .