ENGAGING HEPATITIS C PATIENTS TO IMPROVE RESEARCH METHODS
Written By: Joey Mattingly, PharmD, MBA, Assistant Professor in PPS and PHSR Graduate Student
When I joined the School of Pharmacy in 2014, my primary focus was on teaching pharmacy management and developing research skills in the area of economic evaluation. As a faculty member in the Department of Pharmacy Practice and Science (PPS), I enrolled in the PhD in Pharmaceutical Health Services Research (PHSR) program at the School to become a pharmacoeconomist and build cost-effectiveness studies. However, I enrolled into the program at a time when the culture in research was beginning to shift, primarily because of extraordinary PHSR professors who knew that researchers could do a much better job systematically including the patient voice in our work.
Evaluating Cost-Effectiveness of Hepatitis C Treatments
Like any other graduate student, I dove into the literature around the new treatments for the hepatitis C virus (HCV). With help from Julia Slejko, PhD, assistant professor in PHSR, and C. Daniel Mullins, PhD, professor and chair of PHSR, I developed my very first cost-effectiveness study for HCV treatments, but I fell into the trap of focusing on traditional methods that did not include patients.1 Although it was good experience for me to gain while learning this field, I knew there was much more to do.
Engaging Patients to Improve Methods
After submitting my economic model, I spoke informally with Susan dosReis, BSPharm, PhD, and Eleanor Perfetto, PhD, MS, both professors in PHSR, about the lack of patient input in all of the HCV cost-effectiveness studies that I had reviewed. Without hesitation, Dr. Perfetto smiled and said, “There is your next paper.” So, we went to work. We systematically reviewed economic studies for HCV treatments and found that the inclusion of the patient voice has been limited in this area, to say the least.2
Submission to PCORI – It Takes a Village
One of the key lessons that I’ve learned over the past year is that most good research proposals require a team effort, and all researchers are influenced by the company they keep. With several faculty in the department having success with their contract submissions to the Patient-Centered Outcomes Research Institute (PCORI) – facilitated, in part, by the creation of the PATIENTS Program – a culture of authentic, patient-centered research has weaved throughout the School.
I recently had an opportunity to become the director of operations with the PATIENTS team, where I learned first-hand what it meant to “continuously engage” patients in every step of the research process.3 The natural progression for me was to submit a Pipeline to Proposal (P2P) Tier A award to PCORI, which would fund the work necessary to build relationships with patients in the West Baltimore community where the School of Pharmacy is located. I pitched an idea to leverage the new Community Engagement Center at the University of Maryland, Baltimore (UMB) to work with underserved patients as advisors to our research to Shyamasundaran Kottilil, MD, PhD, professor of medicine and renowned HCV clinician and researcher at the School of Medicine’s Institute of Human Virology (IHV). He immediately came onboard.
With the support of Dr. Kottilil; Ashley Valis, executive director for strategic initiatives and community engagement at UMB; and Dr. Mullins, as director of the PATIENTS Program, our proposal was created and, fortunately, it won over the reviewers at PCORI.
Now the Real Work Begins
In our P2P, we aim to engage underserved HCV patients to inform and improve comparative effectiveness research for HCV interventions. We also plan to develop a blog that will target both patients and researchers to disseminate our work in a way that is meaningful to both audiences. We want to bring patients, clinicians, and researchers to the same table to discuss research questions related to HCV treatment that matter most to patients. This multi-stakeholder approach will help us develop another research proposal that may be of interest to funding agencies such as PCORI, the National Institutes of Health, or the Food and Drug Administration. We’re excited to get started, and can’t wait to see how the results of our work might impact future studies.
References
1 Mattingly TJ, Slejko JF, Mullins CD. Hepatitis C Treatment Regimens Are Cost-Effective: But Compared With What? Ann Pharmacother. 2017;online:July 1, 2017. doi:10.1177/1060028017722007.
2 Mattingly TJ, Perfetto EM, Johnson S. Engaging hepatitis C infected patients in cost-effectiveness analyses: A literature review. Hepatology. August 2017. doi:10.1002/hep.29482.
3 Mullins CD, Abdulhalim AM, Lavallee DC. Continuous Patient Engagement in Comparative Effectiveness Research. JAMA. 2012;307(15):1587-1588.