Members travel to PatientsLikeMe headquarters for in-depth look at the organization’s services and to share guidance on future research and collaborations.

By: Malissa Carroll
Friday, September 19, 2014

Six members from the Patient-Centered Involvement in Evaluating the Effectiveness of Treatments (PATIENTS) program at the University of Maryland School of Pharmacy traveled to the headquarters of PatientsLikeMe – one of the program’s community partners – in Cambridge, Mass., to conduct the program’s inaugural partner site visit from July 16-18. The visit, which showcased the capabilities and culture of PatientsLikeMe, is part of the program’s ongoing effort to support bi-directional learning among its researchers and community partners.

“We are in the infrastructure building phase of the PATIENTS program,” explains C. Daniel Mullins, PhD, professor and chair of the Department of Pharmaceutical Health Services Research (PHSR) at the School of Pharmacy and principal investigator (PI) for the PATIENTS program. “Site visits provide an opportunity for all of our partners to get to know and learn from each other. As the PI, I wanted to learn what the program’s partners want and expect from the University of Maryland, as well as how our researchers can further contribute and help build on existing expertise to conduct patient-centered outcomes research (PCOR) more effectively.”Bi-directional learning is an important component of the five-year, $5 million grant from the Agency for Healthcare Research and Quality (AHRQ) that funds the PATIENTS program. It ensures that the program’s community partners are able to train its researchers on research topics that are relevant to the patient communities they serve; meanwhile, the program’s researchers train community partners in a wide range of research methods and related skills, including qualitative data analysis and grant writing.

Established in 2004, PatientsLikeMe is an online health data-sharing platform through which patients can share their experiences and learn from real-world, outcome-based health data. The goal of this platform is to transform the way patients manage their health conditions and change the way that industry conducts research to improve patient care.

“The PATIENTS partnership is helping us conduct scientific studies with ‘hard to reach’ populations who might not fit the typical profile of our users,” says Paul Wicks, vice president of innovation at PatientsLikeMe. “We have to meet the challenges of recruiting and representing more diverse and representative patient samples through both quantitative and qualitative means. The lessons that we have learned from the PATIENTS program represent a great resource for our team.”

The three-day site visit was attended by six researchers from across the University System of Maryland and Westat, including Mullins, Susan dosReis, PhD, associate professor in PHSR; Joseph Richardson, PhD, associate professor in the Department of African American Studies at the University of Maryland, College Park; Paula Darby Lipman, PhD, senior study director at Westat; Lois Olinger, MCP, senior study director at Westat; Mark Mishra, MD, assistant professor in the Department of Radiation Oncology at the University of Maryland School of Medicine; and Joseph Vandigo, MBA, a current student and graduate research assistant in the PHSR PhD Program at the School of Pharmacy.

“The site visit provided a valuable opportunity to exchange ideas and knowledge about how to improve patient care, particularly how to further empower patients to be critically involved in determining their health outcomes,” says Richardson. “As a PI at the University of Maryland, I believe that it is important for individuals in academia to build partnerships with organizations like PatientsLikeMe to help us understand how to improve our research methodologies for the vulnerable populations that we serve.”

Through presentations and open discussions, researchers offered important insights about how PatientsLikeMe could use data gathered from its users to conduct qualitative research, as well as how the organization could better involve underserved populations in this research. They also hosted a forum about community building and ethnographic research.

“Visiting PatientsLikeMe provided us with an incredible opportunity to learn directly from their staff about the organization’s commitment to building online communities in which patients can record their personal data, connect with others like them, and manage their health,” says Lipman. “Through both formal sessions and informal discussions, we were able to observe how PatientLikeMe’s ‘data for good’ philosophy is clearly communicated to and understood by community members, driving the organization’s mission to collect data about outcomes that are important to patients as well as for research. PATIENTS and PatientsLikeMe are natural partners with complementary interests, and we will continue to learn from each other.”

In addition, 10 members of the PatientsLikeMe team led conversations during the site visit, including Wicks, Emil Chiauzzi, PhD, research director of client services; Maria Lowe, PharmD, health data and drug information clinical specialist; Sarah Mack, community moderator; Tim Vaughan, PhD, director of data science; Liz Morgan, head of community relations; Brian Burns, director of marketing; Shimon Rura, product manager; Kate Brigham, director of design; and Marcy Fitz-Randolph, research client manager.

These individuals delivered presentations that outlined the organization’s history, capabilities, current datasets and data structures, interactions with patients, and lessons learned from previous research. Two patients who currently use the PatientsLikeMe health data-sharing platform also attended the meeting via web-conference to share their experiences.

Encouraged by the success of its inaugural site visit to PatientsLikeMe, the PATIENTS program plans to announce future visits to other community partners as those visits are confirmed.