Resources for Organizations
Patient organizations, research and healthcare institutions, and funders can all play an important role in encouraging and facilitating patient engagement in preclinical research. From incorporating patient engagement into funding priorities, initiatives or criteria, to sharing advertisements for patient partner roles, there are many ways that your organization can get involved. Continue reading to learn about available resources and key considerations for decision makers when implementing patient engagement in preclinical laboratory research.
Patient Engagement in Preclinical Research Policy Brief
A concise document offering a clear overview of preclinical patient engagement, coupled with suggestions for decision-makers implementing this practice.
3 Challenges To Patient Engagement In Preclinical Research And Proposed Solutions
Culture and Awareness
Scientific culture must shift to promote awareness, understanding, and appreciation of the benefits of patient engagement in preclinical research.To do this, there is a need to provide guidance on how to meaningfully engage patient partners in preclinical research.
-
- Actions : Foster an inclusive culture toward patient partners and raise awareness and appreciation for the value of preclinical patient engagement. This requires policies, resources, strategies, and evaluation planning.
Support and Resources
In addition to effort, meaningful patient engagement requires support and resources. This includes educational resources(i.e. to train researchers in patient engagement and patient partners in laboratory research), financial resources(i.e. reimbursement, compensation), and time (i.e. to conduct training, host discussions, and implement patient engagement activities)
- Actions: Create a well-defined strategy to incorporate patient engagement into study timelines and budgets at the start of a study. This can strengthen collaboration efforts by encouraging priority setting and appropriate time and resource allocation.
Capacity and Competencies
Preclinical researchers and patient partners have varied goals, backgrounds, experiences and vocabulary which may hinder effective partnerships.
- Actions: Take a thoughtful and tailored approach to patient engagement. Bi-directional knowledge sharing requires relationship building and time. Prioritizing these relationships helps develop partnerships, create a common vocabulary, and identify shared goals while enabling more productive collaboration.
Policy Brief: The Role Funders Can Play in Promoting Patient Engagement
Despite the value of patient engagement in improving the quality and relevance of research, initiatives to involve patients in the earliest phases of clinical research and trials are relatively new. This policy brief identifies key barriers to patient engagement and summarizes three possible recommendations for agencies and organizations that fund research.
main recommendations
Require Patient Engagement Planning
Require planning for patient engagement throughout the funding process – start with a checkbox but then move beyond this. Funders can require researchers to demonstrate planning for patient engagement in ‘patient engagement’ sections of the grant applications (e.g. a detailed explanation of how they plan to recruit and engage patient partners). In addition, funders should consider small seed grants that could support patient engagement in the grant development process. Funders could also ask for updates on planned patient engagement activities in regular progress reports. These approaches may prevent patient engagement from becoming tokenistic or a ‘tick-box’ exercise.
Support and Resources
Direct researchers to existing patient engagement resources on the funding agency website to highlight expectations, successful practices, and potential frameworks for engagement. Incorporating resources into the existing webpages of funding agencies is cost effective and will increase exposure of best available resources.
Foster Equity, Diversity, and Inclusion
Require researchers to complete training in equity, diversity and inclusion to equip them with the knowledge required to recruit and retain a representative group of patient partners. Researchers will be able to recruit patient partners with an equity-oriented approach, allowing them to identify patient groups that are most affected by systemic oppression and the intervention of interest if it were to be implemented.
A Novel Approach to Patient Engagement at The Ottawa Hospital
Despite growing recognition that patient engagement is a critical component of health research, institutional models to build capacity for patient engagement in research are limited. Here, we highlight key features of the framework for the Ottawa Patient Engagement in Research Model at The Ottawa Hospital (TOH) and the Ottawa Hospital Research Institute (OHRI). In sharing best and promising practices, it aims to contribute to reproducible and scalable models of meaningful patient engagement in research.
Early success of this model can be attributed to :
1) aligned intuitional priorities between TOH, OHRI, and patients;
2) the establishment of a patient engagement policy;
3)ongoing education and support provided to patient partners and researchers, and
4) innovative recruitment, tracking and evaluation procedures.
key Components of the model
Patient and Family Engagement Program
Patient and Family Engagement Program at TOH that recruits, educates, and supports patients, families and caregivers to engage in clinical care, governance and research.
The Ottawa Methods Center
The Ottawa Methods Center at OHRI that leads methodological research and provides support to researchers for patient engagement and patient-oriented research at TOH.
The Office of Patient Engagement in Research Activities
The Office of Patient Engagement in Research Activities at OHRI which facilitates collaborations between patients, researchers, clinicians and other partners.
Resources for Promoting Patient Engagement within your Institute/Organization
Information on Available Funding Opportunities to Share with Research Institutes
IMHA Canadian Institutes of Health Research- Training Opportunities to Share with Research Institutes :
This is a free, online, self-directed course consisting of a number of modules that aim to help patient partners, researchers, trainees, and others involved in research to do patient engagement in research. The course, available in English and French, was developed for use in all research areas, not just musculoskeletal health and arthritis.
Evaluation and Continuous Improvement
As with any collaborative institutional partnership, it is important to check-in and reflect on what is working well, and where there may be areas for improvement. There are many existing tools available for the assessment of your engagement approach. The Public and Patient Engagement Evaluation Tool Version 2.0 in particular includes surveys for organizations, patient partners, and researchers to obtain input and feedback on initiatives.