Current Projects As Principal Investigator

PATIENTS: PATient-centered Involvement in Evaluating effectiveNess of Treatment
PATIENTS combines the expertise of leading researchers from the University of Maryland, Baltimore and the University of Maryland, College Park in partnerships with health care systems and patient communities and advocacy groups to improve health care research and outcomes. Our researchers are committed to working with partners in the community to address real-world concerns and identify and meet the needs of the patients we serve. More information on PATIENTS may be found on the official website here.

Funding for this project is provided through a five-year infrastructure development grant from the Agency for Healthcare Research and Quality (AHRQ).

VIDEO: An overview of the PATIENTS program



engagement methods and we aim to expand rather than duplicate prior work. We will identify evidence-based engagement strategies as well as emerging methods and develop methodological guidance for selecting the most appropriate, meaningful, and impactful engagement method for each step of PCOR, and the relevant resources required.

Our approach builds on Mullins’ prior PCORI-funded contract, Integrating patients’ voices in study design elements with a focus on hard-to-reach populations, which provided results incorporated in the original Methodology Standards and related report to the US Congress, as well as on the prior PCORI-funded environmental scan of engagement methods. Several members of our proposed team worked on this first project and continue to collaborate on one of the first AHRQ-funded PCOR Infrastructure Development grants (R24HS022135, PI = Mullins) entitled, “PATIENTS” (PATient-centered Involvement in Evaluating effectiveNess of TreatmentS). Dr. Mullins created PATIENTS’ infrastructure through partnerships with University of Maryland researchers (representatives of the Schools of Dentistry, Law, Medicine, Nursing, Pharmacy, Public Health and Social Work) and stakeholders from communities of patients (e.g., Mt. Lebanon Baptist Church, an African American faith-based community; PatientsLikeMe, an online social networking community; Bon Secours Baltimore Health System, a safety-net hospital near the university that services primarily low SES minority patients) and healthcare providers (e.g., the Association of Black Cardiologists; Riverside, a network of rural hospitals). These funds support flexibility and organic growth through bidirectional learning, with early evidence (provided by Westat as the evaluation team) demonstrating that the concept of continuous patient and stakeholder engagement is increasingly “hard wired” among members of the PATIENTS program as well as its developing constituency within the larger community. For the proposed PCORI project, we will draw upon the PATIENTS infrastructure, partners, and stakeholders for the full range of perspectives, assistance with recruitment, and guidance on best practices and lessons learned regarding engagement activities.



The objective of this study is to evaluate the costs of Alpha-1 treatment in a general population and among individuals with Alpha-1 whom participate in a disease management program designed for patients with Alpha-1 and their healthcare providers. The cost estimates will be used to model the budgetary impact of implementing an Alpha-1 disease management program.
An example of such a program is the Alpha-1 Disease Management and Prevention Program (ADMAPP), offered by AlphaNet, a non-profit organization which aims to treat the disease, improve quality of life and manage health resources utilized by individuals with Alpha-1, as well as their families and healthcare providers. The program itself consists of six integral components: 1) a guide for persons with Alpha-1 and healthcare providers, so-called the “Big Fat Reference Guide”; 2) a comprehensive health outcome study started on January 1, 2003, currently following more than 1,000 persons with Alpha-1; 3) a unique telemonitoring system; 4) a nationally recognized education program for nurses; 5) a treatment planning and review process; and 6) the Disease Management Advisory Committee (DMAC), consisting of international experts.

This study will quantify costs associated with Alpha-1 and the budget impact of an Alpha-1 an Alpha-1 high-quality care/disease management program in current dollars.