On Jan. 12, 2015, some of the brightest minds in patient-centered outcomes research (PCOR) braved icy weather in Baltimore to attend the second site visit of the PATIENTS Program at the University of Maryland School of Pharmacy.
By: Laura Bogart
Friday, January 30, 2015
On Jan. 12, 2015, some of the brightest minds in patient-centered outcomes research (PCOR) braved icy weather in Baltimore to attend the second site visit of the PATient-centered Involvement in Evaluating the effectiveNess of TreatmentS (PATIENTS) program at the University of Maryland School of Pharmacy. Researchers, clinicians, and community health advocates came together to celebrate accomplishments made in the program's first year, discuss some of the most important issues in PCOR, and to chart a course for PATIENTS' year two.
|Del Price (far left) speaks about the health issues in her community.|
PATIENTS, created in 2013 with a five year, $5 million grant from the Agency for Healthcare Research & Quality (AHRQ), used year one of the program to integrate the members of its internal and external steering committees and to invite collaboration between key stakeholders. These collaborations have the power to develop and sustain lasting partnerships across local, regional, and national communities of patients and providers. Year two is targeted toward patient outreach - one of the PATIENTS program's chief aims is to help patients feel more educated and empowered about their health care choices, and to become more active in clinical research.
"When patients are involved in research, they can help ensure that the questions driving research will be meaningful to them," explains C. Daniel Mullins, PhD, professor and chair of the Department of Pharmaceutical Health Services Research at the School of Pharmacy and director of the PATIENTS program. "We want researchers to understand the value of having patients and other stakeholders involved in every stage of research, from trial designs to sharing information with the community."
The site visit's morning agenda was focused on survey and interview results collected by Westat, the project's internal evaluator, which were presented by Paula Lipman, PhD, senior study director. These surveys and interviews, which were conducted with members of the steering committees, showed that the group has faith in PATIENTS' "strong, stable leadership," and that they were pleased with PATIENTS' initial outreach and communications efforts: launching a website, an e-newsletter, and e-briefs geared toward engaging PATIENTS' partners and steering committee members. Westat recommended expanding these forums to include topics that are more pertinent to patients' interests and concerns -- an approach that was heartily endorsed by the attendees, many of whom spoke about a greater need for health literacy within the communities they serve.
|Marcy Fitz-Randolph with Pastor Franklin Lance|
Making PCOR more impactful for patients and providers requires versatility, and finding creative ways to engage new communities was the subject of two interactive panel discussions. Franklin Lance, D.Min, pastor of Mt. Lebanon Baptist Church in Baltimore, teamed with Marcy Fitz-Randolph, research client manager at PatientsLikeMe, to talk "high touch vs. high tech" approaches to PCOR. Afterward, Wanda Miller, director of Nursing and Patient Care Services at Riverside Health System, and Samuel Ross, MD, CEO of Bon Secours Baltimore Health System, presented "PCOR Across Diverse Health Care Delivery Systems," which offered insights into the unique challenges and opportunities of delivering health care within rural and urban communities.
|Samuel Ross with Wanda Miller|
Participants enjoyed talks on training and stakeholder engagement, as well as updates on the status of PCOR sub-projects funded through the PATIENTS grant. Robin Newhouse, PhD, RN, NEA-BC, FAAN, professor and chair of the Department of Organizational Systems and Adult Health at the University of Maryland School of Nursing, and Wanda Miller shared their enthusiasm for the work they've completed on project one, titled "Improving Heart Failure Outcomes in Rural Hospitals." Susan dosReis, BSPharm, PhD, associate professor in the Department of Pharmaceutical Health Services Research at the School of Pharmacy, discussed the work to be done on project two, which seeks to establish methods to help family members and caregivers choose the best care options for their loved ones.
The patient's voice was always present throughout the day. Patient advisor Daniel Frye, JD, executive director of the New Jersey Commission for the Blind and Visually Impaired and member of the PATIENTS program's external steering committee, spoke about his involvement in making the PATIENTS website more accessible for visually-impaired people (VIPS). He also talked about collaborating with fellow VIP patient advocate Gail Betz, and members of the PATIENTS team on a manuscript that will offer researchers insights on engaging VIPs in clinical trials.
One of the undeniable highlights of the visit was the chance to hear living legend Miss Ernestine Shepherd, who was named the Oldest Performing Female Bodybuilder by the Guinness Book of World Records, talk about her personal commitment to fitness at any age. Each month, Miss Ernestine leads a community walk through Druid Hill Park; representatives from PATIENTS make a point of joining her to show support and share the program's message.
|Miss Ernestine Shepherd|
"Listening to engaged members of the community, like Miss Ernestine, and to the patients who've been so generous with their experiences, really reminds us why PCOR is so important," says Dr. Mullins. "Achieving, and sustaining, good health has the power to transform individuals and build better communities. After all, that really is the ultimate goal of the PATIENTS program."