Emerging Guidelines for Patient Engagement in Research

Abstract

There is growing recognition that involving patients in the development of new patient-reported outcome measures helps ensure that the outcomes that matter most to people living with health conditions are captured. Here, we describe and discuss different experiences of integrating patients as full patient research partners (PRPs) in outcomes research from multiple perspectives (e.g., researcher, patient, and funder), drawing from three real-world examples. These diverse experiences highlight the strengths, challenges, and impact of partnering with patients to conceptualize, design, and conduct research and disseminate findings. On the basis of our experiences, we suggest basic guidelines for outcomes researchers on establishing research partnerships with patients, including: 1) establishing supportive organizational/institutional policies; 2) cultivating supportive attitudes of researchers and PRPs with recognition that partnerships evolve over time, are grounded in strong communication, and have shared goals; 3) adhering to principles of respect, trust, reciprocity, and co-learning; 4) addressing training needs of all team members to ensure communications and that PRPs are conversant in and familiar with the language and process of research; 5) identifying the resources and advanced planning required for successful patient engagement; and 6) recognizing the value of partnerships across all stages of research. The three experiences presented explore different approaches to partnering; demonstrate how this can fundamentally change the way research work is conceptualized, conducted, and disseminated; and can serve as exemplars for other forms of patient-centered outcomes research. Further work is needed to identify the skills, qualities, and approaches that best support effective patient-researcher partnerships.

Good Practices for Real‐World Data Studies of Treatment and/or Comparative Effectiveness: Recommendations from the Joint ISPOR‐ISPE Special Task Force on Real‐World Evidence in Health Care Decision Making

“…If the study hypothesis is sufficiently sharpened on the basis of the signal from an analysis of a subsample of a data set used for an exploratory study and there are no other available data sets, then the same data source may be considered for hypothesis evaluation. 44 Because many consider this practice to be a departure from good science, a publication should acknowledge the risks involved in acting upon the results. In such cases, thorough reporting of how and why the data analysis plan evolved should be provided.…”

Dental Implant Quality Register—A possible tool to further improve implant treatment and outcome

“…Pioneering efforts in this area was made by the scientific organization for outcome measures in Rheumatology (OMERACT) to always involve people living with health conditions to act as collaborative research partners (Kirwan et al, 2017).…”

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

“…Available frameworks suggest structures for partnerships, [13][14][15][16] and literature promotes broad principles such as addressing issues of power and equity [17][18][19][20][21][22][23][24][25] and developing relationships of trust. [20][21][22][24][25][26][27][28][29][30][31] However, it can be difficult for teams, particularly those new to this type of work, to operationalize abstract structures and principles in the specific context of their research project.In this article, we draw from our collective years of experience as patients, caregivers, clinicians, other stakeholders and academic researchers in partnered projects to offer 12 practical lessons we have learned about how to better conduct partnered research. These lessons are intended for all people working in such projects, including patients, caregivers, clinicians, researchers, policymakers, and others.…”