Engaging Patients with Type B Aortic Dissections as Partners in Patient-Centered Outcomes Research

Type B aortic dissection (TBAD) is a life-threatening condition caused by a tear in the descending thoracic aorta. Patients with TBAD face dramatically different options for care without strong evidence for the long-term consequences of those options at an individual level. There are no randomized trials that compare the different approaches in TBAD management, nor is there information available regarding which outcomes matter to people with TBAD given a patient’s unique characteristics or even their willingness to participate in a study that would compare the different approaches.

The project team seeks to build a formal infrastructure for a TBAD stakeholder community (patients with TBAD, clinicians, and researchers) to advise research teams on the questions that are most important to patients with TBAD. This award provides an opportunity to build stakeholder partnerships and grow them to include the organizations involved in research (IRAD, GenTAC Alliance, MAC consortium) while building a governance infrastructure and creating an outreach plan to engage patients with TBAD as research partners. The team will follow the principles of reciprocal relations, co-learning, trust, and transparency promoted by PCORI to engage its patient partners. The team will evaluate the preexisting research knowledge and willingness of patient partners to participate in healthcare research, and to ascertain research priorities from the stakeholder’s perspective and translate these priorities to patient-centered outcomes (PCOR) and comparative clinical effectiveness (CER) TBAD research.

The outcome is to assemble a broad network of patients with TBAD who are well informed, will participate in identifying knowledge gaps that would benefit from CER and PCORI, and who will guide the research prioritization process. The steering committee members will circulate the results to their networks and advise on opportunities for wide dissemination via national meeting presentations, webinars, and peer-reviewed publications. The information dissemination will include the results of the initial survey, literature review and fact sheets, and research prioritization. Moreover, creating this community will also allow future patient activation for pragmatic trials.

The project team will begin by creating a six-member steering committee (four patient consultants, two researchers) to guide the proposed project. Steering committee patient partner members will be paid through UW at a rate equivalent to a junior faculty member. The team will form an advisory group of leaders in research and patient advocacy (15-20 members) to provide input to shape the TBAD research collaborative’ s efforts. These groups will each meet on a monthly basis. The broad TBAD virtual patient network engagement will start with a webinar to explain the objectives of this grant, the methodology employed, and explain the survey process and how the stakeholders can be involved. These webinars will be placed on social media and stored on the collaborative website. An in-person meeting will take place in year 1, and funds allocated for travel support will be disbursed to meeting attendees based on need and level of engagement with project work. At each milestone, the team will disseminate the results via social media, the collaborative website, and professional society websites. This allows for expansion and increased diversity of the stakeholder group and continued incorporation of patient perspectives/experiences into research question development.