How can engaging patients and the public enrich your research?
Involving patients and the public will increase awareness of different perspectives and have the potential to make research activities more relevant. There is an increasing focus and expectation on stakeholder involvement in research to meet societal challenges. Research professionals often have different understanding of a patient's needs and care than the patients themselves.
Patient and Public Involvement in research definition
Research carried out:
- with members of the public
- by members of the public
rather than to, about or for the public.
Public involvement - what, how and why
What
What do we mean by "public involvement" in research? People are often quite familiar with the term public engagement but are less sure about how this differs from involvement in research, co-production or participation. The various ways are described, and illustrated with examples, in the following sections. It should be noted that patients are included in ‘the public’ or ‘citizens’ and therefore it´s common to use ‘the public’ in general descriptions.
How
Involving patients and the public can be done in a number of different ways and how will depend on project, reasons and expected outcomes. It is recommended to consider involving patients and the public early in the research project and continue to involve in various ways throughout the research project.
Why
- Get different perspectives and new ideas
- Increase awareness of needs and gaps in care
- Improve research quality and relevance
- Research funders’ requirements
- Scientific journals encourage involvement
There is increasing evidence that health research conducted with public and patient involvement achieves better outcomes for patients and thereby societal impact.
Terms, descriptions & examples
Description
Involvement in research is research done with or by patients and the public, not to, about or for them. It is about working collaboratively with patients and the public to design, carry out and make decisions during the research project. Public involvement refers to an active partnership between the public and researchers that influences and shapes research.
KI example
Youth co-Production for Sustainable Engagement and Empowerment in health (YiPEE)
The researchers will use a youth-driven approach, meaning that young people will be involved in developing and implementing the program. The project will study how effective the program is, how much it costs, and how well it can be adapted for different locations.
Description
Engagement is a two-at process which focuses on raising awareness, sharing research knowledge and findings with the intention to generate mutual benefit. National Institute for Health Research definition refers to public engagement as an activity where information and knowledge about research is provided to or shared with the public.
Description
Public participation is where patients or members of the public are participants in or the subjects of research. For example, being recruited to take part in a clinical trial or another kind of research study, joining a focus group or completing a questionnaire.
KI example
Serious eating disorder ARFID is highly heritable
Estimated 1-5% of the world’s population suffer from an eating disorder that few people are even aware exists. Avoidant/restrictive food intake disorder, ARFID, is a serious eating disorder that leads to malnutrition and nutritional deficiencies.
Description
Co-creating a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge.
KI examples:
Patient in the driver seat - this program operates in close cooperation with people with long-term illness and their family members as well as the healthcare providers that serve them. The program builds on patient-driven innovations to promote self-care and co-care and studies their implementation into everyday health services and the daily life of patients.
“Moving people” project aims to advance knowledge related to global migration, disparities, and health. Methodologically the project is conducted:
- in close collaboration with people who have migration and/or refugee experiences
- with diversity among stakeholders
- with social partners, that can inform and actively be part of relevant community-based research
The ambition is to critically explore migration while embracing pluralism in ways to create knowledge and sustainability in ways to build communities.
Description
Outreach is the activity of providing services to any population that might not otherwise have access to those services. Outreach means trying to reach out to people and groups who would otherwise probably not have access to what academia has to offer, both in terms of research and education.
Forms of outreach:
- information and communication events
- collaboration between different actors: industry, the public sector or academia
KI examples
Spotlight on - what kind of research is conducted within different medical areas, and what do the scientists say about it? Here we highlight various issues in popular science themes.
“Learn to live a healthier life” - a popular science workshop by Lifestyle4Health filled with lectures, health marker measurements, and practical "patient cases". Participants considered and discussed lifestyle habits that may lead to poorer health and those that may benefit the treatment or prevention of the most common non-communicable diseases. The participants even implemented what they learned with a short exercise break.
Description
Citizen science refers to activities conducted by scientists in collaboration or consultation with the public at any stage of a research project. Citizen science plays an important role in encouraging public engagement with research and tackling real-world problems. Research involving citizens and allowing them to gain more insight into the scientific process can lead to more trust in science in general.