Patients and their caregivers have an expanding role to play in clinical research

By Heather Mack
04:23 pm

Patients and their caregivers are playing increasingly prominent roles in research and healthcare technology innovation. As with any emerging shift in healthcare, creating the right foundation to facilitate more robust, inclusive and insightful research comes with challenges, which is where the National Patient Powered Research Network (PPRN) comes in. 

“Recruitment into registries and clinical trials is going mobile – we find the right patient, the right trial and the right time. If they don’t qualify for one study, we will find another for them,” said Connected Health Resources Cofounder MaryAnne Sterling during the Connected Health Conference in National Harbor, Maryland this week.

Sterling works with the National Alzheimer’s and Dementia Patient and Caregiver Powered Research Network, a PPRN under the national network of such organizations called PCORnetAs a family caregiver herself, Sterling works with others in the network to connect with research organizations like the Brain Health Registry at University of California, San Francisco to improve research and patient participation.

“Our goal is several-fold: Enroll increasingly large groups, obtain self-reported measures of cognition, screen and refer patients for clinical trials and test a computable patient phenotype,” Sterling said. “We want to change the image of clinical research, and we’re doing that by bringing Alzheimer’s research to the people."

By working with patients and their caregivers directly and leveraging the collective power of research organizations, registries and support groups, PPRNs hope to create a more holistic and closed-loop process for clinical trials. Some PPRNs are harnessing more passive and active data from wearables to create more robust datasets, and creating the digital infrastructure for patients to access data they may not be able to see once they leave the doctor’s office.

“We try to engage them in research versus utilitze what we already have,” said Cara Pasquale, who runs a PPRN for the COPD Foundation. “We have a state captain program, so we have COPD patients in almost every state to understand what we are doing nationally, we have digital ads to get the message out when we want patients to try a new tool like an app.”

Pasquale gave an example of some of her organization’s current projects, which include a pilot to integrate the PPRN with patients’ electronic health records, a Apple ResearchKit integration and a CT scan integration.

With ready access to participants, clinicians and PPRN leaders can get more feedback, plus learn how to approach participants more mindfully. Most PPRNs have patient ambassadors who work on the governance board, and can bring insight to researchers, technology companies and clinicians.

“When you are dealing with patients who have a very high interaction with the healthcare system, who see seven, eight, nine types of specialists or more, trying to remember what is going on and having all of these different files to carry around is overwhelming,” said Christopher Scalchunes, who is vice president of research for the Immune Deficiency Foundation. “We started working with Get Real Health (an instant PHR platform) to allow data sharing, which meant we worked from the back end of putting the patient experience first.”
Ultimately, PPRNs want to make contributing to research easier and more rewarding for patients.

“We want to take the mystery out of clinical trials, remove stigma of diseases and embrace cultural differences, while also utilizing diverse platforms and focus on the health of family caregivers, who need to have their voice heard in finding treatment,” said Sterling.


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