Examining the Needs of Patient Stakeholders as Research Partners in Health Data Networks for Translational Research.

Patient stakeholders are getting increasingly involved in research health data networks, particularly as research partners. However, tools do not exist to help effectively orient, educate, and engage patient stakeholders as they take on these roles. Using a human centered design approach, we conducted a patient stakeholder needs assessment qualitative study to identify key user needs to drive design recommendations for development of an online education and engagement tool for research health data networks. We found three key needs related to multiple role identities, motivations and expectations for participation on research teams, and patient journeys. Design recommendations derived from the needs assessment are discussed that can support future tool design and testing.

Conflicts of Interest and Distribution of Resources to Community Partners: An Organizational Ethics Dilemma.

BACKGROUND: Conflicts of interest can arise when faculty and staff administer programs that distribute research funds, training opportunities, and other resources across academic and community partners. We describe the ethical concerns encountered by a Clinical Translational Science Award (CTSA) program in administering its community-focused pilot grant program and how its Research Bioethics Consultation service helped to address them.Ethical Concerns: CTSA program faculty and staff identified ethical concerns in several areas, including appropriateness of including Regional Research Collaborations (RRC) faculty as principal or co-investigators on applications, determining how much help RRC faculty and staff should provide to prospective applicants, and creating a fair and effective application review process. DISCUSSION: The CTSA program identified common goals and values for its community-focused pilot grant program, and resolved the conflicts of interest with the new pilot grant policies. This approach could generalize to conflicts of interest that arise in other academic-community partnerships.

Primary Care Patients' Willingness to Participate in Comprehensive Weight Loss Programs: From the WWAMI Region Practice and Research Network.

PURPOSE: In the United States, 69% of adults are overweight or obese, as defined by a body mass index (BMI) ≥25 kg/m(2). The US Preventive Services Task Force recommends screening all adult patients for obesity and referring obese patients to intensive, multicomponent behavioral weight loss programs comprising 12 to 26 yearly sessions. The objective of this study is to determine the degree to which overweight and obese primary care patients report willingness to participate in these intensive weight loss programs and to identify the patient factors associated with reported willingness to participate. METHODS: This 2013 cross-sectional survey was offered to all adult patients seen for an office visit at 1 of 12 primary care clinics in the Washington, Wyoming, Alaska, Montana and Idaho (WWAMI) Region Practice and Research Network (WPRN). Patients self-reported both their health information and their willingness to participate in a comprehensive weight loss program. Respondents were characterized by descriptive statistics. We compared reported rates of willingness to participate by patient factors and assessed which patient factors were independently associated with reported willingness using bivariate analysis and logistic regression, respectively. RESULTS: Of overweight and obese respondents, 63% reported willingness to participate in comprehensive weight loss programs. Age, sex, race/ethnicity, insurance status, BMI, and reason for wanting to lose weight were all significantly and independently associated with reported willingness to participate. CONCLUSIONS: Reported willingness to participate in comprehensive weight loss programs suggests that additional resources are needed to understand strategies for disseminating and implementing effective comprehensive weight loss programs.

Evaluating the Development, Implementation and Dissemination of a Multisite Card Study in the WWAMI Region Practice and Research Network.

BACKGROUND: Practice-based research networks (PBRNs) promote the conduct of research in real-world settings by engaging primary care clinicians as champion research collaborators. Card studies are brief surveys administered to patients or clinicians at the point of care. The objective of this paper is to describe the design and evaluation of a card study methodology that the WWAMI Region Practice and Research Network (WPRN) used to develop research partnerships across multiple member sites. METHODS: We used a collaborative model to develop, implement and disseminate the results of a network-wide card study to assess patient preferences for weight loss in primary care. After the card study data collection was completed, we conducted individual and focus group interviews and a brief survey of participating practice champions. RESULTS: Increased research engagement and personal and professional developments were the primary motivators for participating in the development of the card study. Increasing research activity at practices and learning information about patients were motivators for implementing the study. Their participation resulted in champions reporting increased confidence in collaborating on research projects as well as the development of new clinical services for patients. DISCUSSION: This collaborative model positively influenced research capacity in the WPRN and may be a useful strategy for helping PBRNs conducted translational research.