PE-3: The Levels of Public and Patient Involvement
By Carolyn Shimmin
Determining at which level of involvement patients and/or members of the public will be engaged is primarily a question around the decision-making process of the research study (i.e. who holds the decision-making power?).
I am a big proponent of shared decision-making throughout the entire research process — meaning patients and/or members of the public have equal say in decisions with regard to the study as do researchers. Better yet, a patient-directed level of involvement means people, informal caregivers, families and communities with lived experience of health conditions are the final decision-makers over the entire research process.
The Spectrum of Engagement
Public and patient engagement organizations such as the Strategy for Patient Oriented Research (SPOR), the Patient-Centered Outcomes Research Institute (PCORI), the International Association for Public Participation (IAP2) and INVOLVE see patient and public involvement in health research as existing on a spectrum. On one end, we see a level of engagement offering minimal opportunities for people to give feedback on research processes. On the other end, we see maximum collaboration and shared decision-making between researchers and patient research partners.
It’s also important to note that throughout the research process, people can be engaged at different levels at different phases of the study. So with that in mind, let’s take a look at the different levels of patient and public involvement in health research, and what they might look like.
The primary goal of the consultation level of public and patient engagement is to obtain feedback or input from people, informal caregivers, families and communities with lived experience of health condition(s). This is considered the lowest level of involvement because researchers still maintain all of the decision-making power when it comes to research processes, and a lot of times it is about getting feedback from patients on research priorities or questions that researchers have already developed.
Patients and/or members of the public can be asked for their opinions, advice and information on research: priorities, questions, study design, data collection methods, outcome measures, analysis of results, relevance of findings, dissemination of findings, etc.
Consultation can involve a variety of different types of engagement approaches including: comment forms and surveys; forums, public and town hall meetings; focus groups; interviews; etc.
A special note regarding surveys — it’s critical to understand that using surveys as a consultation tool is very different from having patients fill out a survey as part of your research. When a survey is used as an engagement tool, questions are about the research process itself (i.e. the research priorities, the development of the research question, the study design, the data collection, the outcome measures to be analyzed, the relevance of the findings; the dissemination methods, etc.). In contrast, if the survey is collecting information from patients as part of a study (e.g. do you prefer one intervention over another?), it is, to put it simply, survey-based research instead of public and patient engagement.
The two most important things you have to remember when it comes to the consultation level of involvement are to:
- Ensure you have a clear understanding of which decisions regarding the research process patient partners may be able to inform (i.e. Is there an opportunity for them to inform decisions about research: priorities? questions? outcome measures? design or methodology? interpretation of findings? dissemination methods?) — and clearly communicate this to patient and public research partners; and
- Continually inform patients and/or the public on how their feedback is informing the research process.
The involve level of engagement is about working directly with patients and/or members of the public throughout the research process — especially at the planning stage — to ensure their hopes and concerns are clearly understood and considered, and the research process directly reflects these aspirations and apprehensions. This level of involvement is a step up from the consultation level because people with lived experience have more of a say in the decisions surrounding the research process (i.e. priorities, questions, design, methodology, interpretation of final results, knowledge translation), but researchers still hold the ultimate decision-making power even at this level. Examples of engagement approaches that may be considered include: workshops; advisory committees; and patient-observation of existing health services in action — all of which will be discussed in future blog posts.
It is, again, important to:
- Set clear expectations around the level of influence patients and/or members of the public will have on decisions with regard to the research process; and
- Frequently communicate to people with lived experience how their concerns and hopes are directly informing the research process.
The collaborate level of engagement entails actively partnering with public and patient partners in every aspect of the research process, including the: research priorities; research question; research design; data collection approaches; outcome measures; analysis of results; relevance of findings; dissemination of findings, etc. It is an ongoing partnership where decisions about the research process are shared. For example, members of the public might collaborate with researchers on developing the research grant application, be members of the study advisory group, and collaborate with researchers to disseminate the results of a research project.
At the collaborate level of involvement, a variety of approaches can be used, including participatory decision-making and design and patient journey mapping, which will be discussed in future posts. This level of involvement requires: commitment, trust-building, openness, flexibility, time, resources, adequate planning and preparation, and reflexive practice.
It is also important to think about things like trauma-informed, anti-oppressive, anti-racist, and anti-colonial approaches as well in order to ensure meaningful and authentic involvement, and to be able to recognize and respond to power imbalances between researchers and members of the public on the study team.
4. Patient- and Public-Directed
Sometimes also referred to as ‘user-controlled’ or ‘user-led research,’ this is when patients and/or members of the public actively control, direct and manage the research process. Patients and/or members of the public decide on the issues and questions to be looked at, as well as the way the research is designed, planned and written up. Patients and/or members of the public will run the research advisory or steering group and may also decide to carry out the research. Approaches that can be used include participatory decision-making and design.
At this level of involvement, the role of the researcher may be to train and support patients and/or members of the public in the research process, and in some instances, help patient or community groups in carrying out the research under their direction. The key thing to remember with this level of involvement is that all decision-making with regard to the research process is made by patients and/or members of the public.
At what level of involvement have you engaged patients and/or members of the public in your health research? What were some of the successes you achieved, and some of the challenges you faced?
This is the third in a series of posts by Carolyn specifically addressing public and patient engagement. Links to other blogs in this series are found below:
- PE-1: What is Patient Engagement Health Research?
- PE-2: The Value of Public and Patient Involvement in Health Research
- PE-4: Are you Ready for Patient Engagement? Assessing Expectations
- PE-5: Purpose of Engaging Patients and the Public
- PE-6: What Influences Someone’s Motivation to Get Involved in Health Research?
- PE-7: How do I Find People to Involve in My Health Research?
About the Author
Carolyn Shimmin (@CarolynShimmin) is the Public and Patient Engagement Lead at the George & Fay Yee Centre for Healthcare Innovation (CHI). Her experience includes stakeholder engagement, research, writing and reporting on various health policy issues including mental health, addictions, trauma and the sexual exploitation of children and youth. Areas of interest include patient engagement, lived experience research, knowledge translation, trauma-informed approaches, intersectional analysis, and poststructuralist queer theory.