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Participation in clinical trials (= being a “participant”), providing data without further (active) involvement in the study.
Research happens for or to patients.
Though there are theoretical differences between patient engagement (PE) and Public and Patient Involvement (PI) according to regions, for the purpose of the PERC, as the resources had been compiled from a wide variety of sources, they had been used interchangeably.
There are many reasons why patient engagement could benefit your research. Patient engagement practices even in fundamental and pre-clinical research increase the quality, patient relevance and societal acceptance of your research and its results. By engaging with patients, you play a part in shifting and improving research practices, you contribute to a more open and accessible research and you empower patients to have an active role in research, that could impact their well-being. In addition, research funders are increasingly attentive to patient engagement in biomedical research, and having a meaningful patient engagement plan in your research proposal could also be an eligibility criteria to obtain your funding grant.
We invite you to watch our “Stories” videos and find out the “why” of the researchers we featured.
There are various stakeholders you could engage with depending on what you want to achieve through your patient engagement practice.
Those stakeholders can be:
- individual patients: they bring in their individual perspective and experience as patients
- carers: they bring in their individual perspective and expertise as a person who cares for e.g. a family member or close friend.
- patient advocates/ patient organisations representatives: represent a group of patients or an organization, bring in a more collective perspective.
- patient experts: besides the experience of a patient, patient experts are also trained in e.g. research methods or other aspects of research and innovation (e.g. EUPATI Fellows)
We invite you to take a look at one of the resources under the “Fundamentals” section developed by PARADIGM: “Identification of Patients Representatives”. This material will give you recommendations on how to find the right profile and match.
You may also start by identifying relevant patient organisations in your region or your country. As a starting point, you could also browse the list of members of the European Patients’ Forum.
European Patients’ Forum Members List
If you would like to get in touch with patient experts, you can use the EUPATI Connect Platform. The EUPATI Connect is a place where both EUPATI Patient Experts (+200 patients who went through a training programme on research and development) and researchers can connect, to create mutually beneficial opportunities and to enhance the future of patient engagement.
Furthermore, Synapse is a dynamic user-populated platform that categorizes and ‘maps’ patient engagement initiatives and frameworks, and organisations active in patient engagement.
There are many ways to engage with patients, ranging from consultation, and forming advisory boards to even more active and engaged roles where research is co-created. The European Commission defined six types of roles: research subject, insight provider, advisor, reviewer, co-researcher and driving force. The role and activities should reflect what you would like to achieve.
EUPATI has designed a handy Patient Engagement Roadmap that follows along with the medicines Research and Development lifecycle and is illustrated with concrete examples to get a better idea. Some of the examples from the Roadmap include involving patients in gap analysis and early horizon scanning, protocol design, identifying logistical challenges to trials, improving access and adherence, updating safety communication, reviewing lay summaries of results, dissemination of results to the patient community and the public, and many more.
Regardless of the degree of engagement you decide to start with, please bear in mind that to be meaningful for patients and research teams, patient engagement requires proper planning, time and dedicated human resources.
Yes, a training session can be a very good way to deepen your understanding of patient engagement practices. You will find two examples of training in our “Fundamentals” section and below:
- EUPATI offers group training sessions for academic researchers throughout the year. More information can be found here.
- Canadian Insitutes of Health Research (CIHR) developed a free online course of four modules available in English and French.
We would love to hear from you! Feel free to send us more information by completing the contact form under the “Get in Touch” page.
Help us spread the word about the Resource Centre by downloading the Media Kit here. Don’t hesitate to contact us, if you would like to invite us to give a presentation or a talk about the PERC.