This qualitative study examined the results of 18 months of data collection for a project, funded by the PCORI in which patient-partners, physician investigators, PhD investigators, and managers worked on teams building a network of patients for future research projects, to review plans, ideas, and protocols for research studies, and to generate ideas for future research endeavors.
The Vasculitis Patient-Powered Research Network
Vasculitis is a set of rare organ- and life-threatening diseases of vascular inflammation linked by similar pathophysiologies. Despite improvement in the overall prognosis of vasculitis since the introduction of regimens based on combination immunosuppressive therapy, the cumulative morbidity and mortality from both disease and treatment for most patients, the social impact, and the costs remain high.
The Vasculitis Patient-Powered Research Network (VPPRN) is a collaboration among patients, patient advocacy organizations, academic clinical investigators, expert clinicians, biomedical informaticians, qualitative and quantitative methodologists, and funding organizations, all dedicated to conducting high-quality clinical research in vasculitis (www.vpprn.org). The VPPRN was a founding member of the Patient-Centered Outcomes Research Network (PCORnet, www.PCORnet.org). PCORnet directly engages patients, physician-investigators, research methodologists, and project managers to work together to build a collaborative national resource using the partnership and health data for better research . Patients are fully engaged in the management of the Network with roles that include strategic planning, developing, reviewing, and approving research studies.
The VPPRN embraces the collaborative, patient-centered philosophy of PCORnet and has, from the inception of the Network through its full implementation, involved patient-partners at every level of organizational governance and research planning. The co-principal investigators of the VPPRN are an academic physician-scientist and a patient-partner, and the VPPRN is an extension of an already highly collaborative relationship among the Vasculitis Clinical Research Consortium, the major vasculitis research network, and the Vasculitis Foundation, the major patient advocacy group for vasculitis. Additional patient-partners with vasculitis were chosen by the patient co-PI and Vasculitis Foundation staff through a competitive selection process. Training in patient participation in research was provided to all patient-partners. Patient-partner training was developed in collaboration with consultants from the Organizational Dynamics Program at the University of Pennsylvania and was provided online over multiple training sessions by the VPPRN Network and Data managers.
The VPPRN maintains an on-line research registry through which patients with all forms of vasculitis provide clinical data about their condition. The type of information collected through the VPPRN portal includes data elements relevant to diagnosis, disease extent, medications, demographics, healthcare team, and patient-reported outcomes. Member patients in the VPPRN have consented specifically to take part in research activities.
All patients, physician-investigators, and managers who had participated in the VPPRN governance since 2014 were invited to participate in the study; a total of 22 interviews were conducted. Because of the differences in status and authority (actual or perceived) between patients and physician-investigators, the study was interested in understanding how patients, physician-investigators, PhD-investigators, and study staff worked together. All participants in this study, including patient-partners, investigators, and study staff provided informed consent to participate in the interviews and observations, and to have their data used for publication. Thirteen of 17 patient-partners involved in the Network governance structure participated in this project in 2015–2016 and were interviewed about what they learned from working on teams with physician-investigators. Four of 6 physician/PhD-investigators involved in the network governance structure participated in this project and were interviewed about what they learned from working on teams with patients. The 3 research managers (Network Manager, Project Manager, and Data Manager) were interviewed about what they learned from working on teams with both patients and investigators.
The interviews were conducted using an internet-based conference system and were recorded to ensure accuracy. The interviews were transcribed for coding. Interviewees were asked 11 questions. The questions ranged from what they have found to be most exciting about working on teams with investigators and patients to specific questions about what the interviewees learned from working with those outside of their identity group. Emerging themes and the researchers’ impressions regarding the interactions between physician-investigators and patients, boundaries, norms, roles, leadership and decision-making were documented.
In-person meetings and teleconference calls
The rich interview data was supplemented with the observational data. The use of observational and interview data helped to gain a deeper understanding of what physician-investigators and patients are learning from working together. Participant researchers attended a total of 74 meetings, 6 were in-person and the rest were by web-conferencing. Official minutes and participant researchers’ observational notes from the 6 in-person meetings and 42 telephone/web-conference meetings were reviewed and coded. Of the 74 meetings the participant researchers attended, 42 were chosen for review and coding. These 42 meetings were chosen for analysis as 2 or more patient-partners participated. Since the focus of this research is on what investigators and patient-partners learn from working together, only the meetings with 2 or more patient-partners involved were included in the analysis.
The interview and meeting transcripts were reviewed and coded for emergent themes, insights, and patterns, and analyzed utilizing a hybrid method of coding. There were three researchers coding the meetings independently. The hybrid approach included incorporating a priori codes derived from literature references and open, emergent codes arising in the data that were different from the pre-set codes. The same method of coding was applied to the observational documents until data saturation was reached. For the purposes of this research, data saturation was met after the coding of 42 of the meetings and the 13 interviews. The coding scheme was refined and each category defined by breaking down flourishing codes into sub-codes and collapsing other codes into larger themes. Final codes and categories were transferred into a data table.