Empowering the Digital Patient: How Three PCORnet Partner Networks Answered the Call from Patients and Caregivers Who Want to Share Their Own Health Data

In the past few years, Kiely Law has noticed a common frustration in the autism community. Families and adults with autism want to know why it is so hard to share their medical records with the research registry she co-founded, the Interactive Autism Network. As research director of the Interactive Autism Network, a partner network of PCORnet, the National Patient-Centered Clinical Research Network, she knows the importance of listening to and responding to participant concerns.

According to Law, one major barrier to using patient health records for research is the format. “Many participants in the Interactive Autism Network have offered to send in scanned copies of their medical records. Unfortunately, reviewing each chart manually and extracting specific data for research use is simply not practical on a large scale. We have over 57,000 participants in our network,” said Law.

When Law surveyed the families in the Interactive Autism Network to see how many wanted to share medical records for research purposes, 67 percent said yes.

“The families I work with are
not satisfied being passive
observers in autism research.”

Kiely Law – Principal Investigator, Interactive Autism Network

“The families I work with are not satisfied being passive observers in autism research,” said Law. “They want to feel empowered to use their experience to create new knowledge that will lead to better care.”

These results echo other recent survey outcomes. In fact, one 2016 study published in the Journal of Medical Internet Research found that, while there were general concerns about the detrimental consequences of data falling into the wrong hands, 39 of 40 patients surveyed thought the altruistic benefits of sharing health care data for research outweighed the risks.

Taking action

As it turns out, Law wasn’t the only PCORnet principal investigator hearing this feedback. Investigators from NephCure and Phelan-McDermid had similar experiences, prompting the three partner networks to take action. With support from PCORI funds and in collaboration with PCORnet’s Coordinating Center, the networks launched a pilot study. Their research question: Is it possible to empower patients to share their own health data in a research-ready format by using a secure personal health record app?

Finding the right technology was key, and that’s where Medfusion, a leading healthcare IT company focused on patient-centered solutions, came in. The company was excited by the idea of a patient-driven health data portal and offered to design the technology, including a mobile app, at no cost.

With Medfusion’s help, the team designed a portal that pulled in patients’ health data in the standard Consolidated Clinical Document Architecture format. Consolidated Clinical Document Architecture is a common way of coding electronic clinical documents so they can be read and understood more easily by a broad range of people. From there, the team worked with Medfusion’s software to match this data to PCORnet’s Common Data Model, which readies data for research use.

Research participants used the app to collect records from their healthcare providers and send the data to their research registry. “Our aim was to offer patients an easy-to-access portal that puts them in control of their own health data and empowers them to share it at will with the research community,” said Law. “I’m pleased to say that we were successful, and we are excited about the possibilities of this technology for the future.”

The technology offers a way to make families partners in research. Rather than passively waiting to see what research brings, these families may contribute to and influence future insights. For researchers, it offers the promise of improved registries that are complemented by these rich, patient-provided health records.

Next steps

The pilot, which ended in February, was an exciting step forward, but Law said that the process and technology have not yet been perfected.

“We realized that the vision we had was possible, but the process is still more cumbersome than we would like, so there is more to be done to make it a practical solution,” she said. “The next step would be another exploration building on the lessons we have learned.” 

“We have more work to do,
but we all feel good about
moving forward on a solution
that puts power back in the
hands of patients and caregivers.
That’s what patient-centered
research is all about.”

Kiely Law – Principal Investigator, Interactive Autism Network

In the meantime, Law and her other study collaborators at NephCure and Phelan-McDermid are continuing efforts to bring more patient-centered solutions to light.

“This pilot study was unique because it was a direct result of grassroots feedback at the community level,” said Law. “We have more work to do, but we all feel good about moving forward on a solution that puts power back in the hands of patients and caregivers. That’s what patient-centered research is all about.”

 

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

 

 About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.