Research Tools
Our tools offer engaging ways for patients and researchers to partner during research planning, implementation, and dissemination.
The tools listed below were developed by the Alliance based on our years of experience bringing researchers and patients together. Visit our research studies page to learn about patient centered research studies we have supported so far and contact us to learn more about how you can employ them in your work. Our partners at PCORI (Patient-Centered Outcomes Research Institute) also offer a useful collection of engagement resources.
Designing Research in Partnership with Patients
One of the most powerful times to involve patients in the research process is at the very beginning, before you settle on your core research questions. Unfortunately, the opportunities to discuss shared interests and develop patient-centered research questions are rare.
The Heart Research Alliance developed an innovative research design workshop to solve for this problem. The workshop guides patients and researchers though a rapid, participatory design process from brainstorming research questions to outlining a draft protocol with the goal of developing fundable, patient-powered research proposals. This proven process has generated multiple funded research projects, and we’ve developed a tool-kit to help share this methodology more broadly.
Cause groups are a method developed by the Heart Research Alliance to connect like-minded patients and researchers. These groups, supported during period of PCORI funding, focused on a specific disease area, included patients and researchers with shared interests, and met regularly via conference call to generate potential new research and methods of collaboration. The PCORnet Coordinating Center documented the cause group purpose and process, outlining the cause group engagement model and how it can be adapted to form and support cause groups for your community.
Patient-Centered Review
Patient-Centered Reviews are a process by which patients can provide input on researcher-designed study protocols. These Patient-Centered Reviews give patients a chance to meet with researchers to review rationale, study goals, inclusion criteria, consent language, patient outreach strategies and study timeline. Patients can ask questions about any aspect of the trial that they do not understand, and provide feedback to the study team about ways to make the research more “patient-friendly”.
Recruitment of patient leaders
The foundation of any great patient / research partnership is finding a connection across similar interests. If your project meets the Alliance Criteria for Sponsorship, the Heart Research Alliance may be able to help you find a patient interested in doing patient centered research.
Conducting Research in Partnership with Patients
The Heart Research Alliance developed a set of criteria to help determine if a study is patient-centered, and we’ve sponsored projects that meet this criteria. Research projects that are Alliance-Sponsored can gain access to a wide range of research and patient engagement resources and support. This includes highly effective patient governance and engagement mechanisms and wide-reaching study communication and dissemination channels.
Patient Advisory Board
Patient Advisory Boards provide ongoing feedback to research teams about the patient perspective on all aspects of a study including study design, implementation and results dissemination. Unlike a Patient-Centered Review, which is a one-time review before research begins, Patient Advisory Boards represent an ongoing collaboration with the study team to review and give feedback on study materials and processes. We feel this helps make the study more patient-centered, relevant and impactful.
Training, coaching, and support for research partners
Through our experience we’ve learned collaboration between patients and researchers requires new skills (for both parties), and a mutual commitment to honoring the different knowledge and perspectives of each group. Most patients have never dreamed of becoming research investigators; most researchers have not partnered to implement research with individuals outside of academic institutions.
We have a host of resources, ranging from peer coaching to suggested team guidelines for effective collaboration. Our goal is for these tools to help us all navigate unfamiliar waters and collaborative effectively. These tools include:
Collaboration ground rules and tips
Meeting and communications processes to support impactful collaboration
Guidelines for patient payment
Patient reports on study progress
Trainings for how to be a patient-investigator on a research project, interact with a research team, and best advocate for patient-centered approaches
Peer coaching for new patient research partners.
“When it comes to generating new ideas for research, there is nothing better than sitting down with a group of engaged patients, listening to each other, and brainstorming together”