“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,” Mack quotes Connected Health Resources Cofounder MaryAnne Sterling, attending the Connected Health Conference in National Harbor, Maryland last week.
Sterling works with the National Alzheimer’s and Dementia Patient and Caregiver Powered Research Network, which is a a PPRN under the national network of such organizations called PCORnet. She is also a family caregiver and as such, 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.
Change image clinical research
The goal of this co-operation is several-fold, Sterling says:
• Enroll increasingly large groups;
• Obtain self-reported measures of cognition;
• Screen and refer patients for clinical trials;
• Test a computable patient phenotype
Ultimately, the aim is to change the image of clinical research, by bringing Alzheimer’s research to the people. The mobile and wearable ecosystem is playing its part here.
Leveraging collective power
By working with patients and their caregivers directly and leveraging the collective power of research organizations, registries and support groups, the goal of PPRNs is 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, creating the digital infrastructure for patients to access data they may not be able to see once they leave the doctor’s office.
An example comes from 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.” Some of her organization’s current projects include a pilot to integrate the PPRN with patients’ electronic health records, an 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. 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,” Sterling concludes.