Engaging people with lived experience: best practice, challenges, and opportunities
What we did
Democratic Society was commissioned by the Health and Social Care Alliance Scotland (ALLIANCE) to identify and share best practices and evidence on including people with lived experience in health and social care policy. We were looking at ways in which people with lived experience have previously been meaningfully engaged in decision-making and/or policymaking processes.
We defined four key lines of enquiries that guided us to find the most relevant case studies and the questions to pose participants:
- What approaches, design features and tools (including digital and platforms) are used to engage with people with lived experience, and what makes them effective?
- What barriers can we identify during different phases of engagement?
- When people with lived experience are active and equal partners, what does that look like?
- What is the impact on policy and practice of including people with lived experience in decision-making processes related to health and social care?
For this research, lived experience relates to the first-hand experiences of social issues such as care, health or discrimination as well as of the services providing social and health care.
How we did it
The project had four steps: desk research, a workshop and feedback questionnaire with people with lived experience, and interviews with policymakers.
For the desk-based research we explored 31 sources, including both academic and practiced-based studies. We then explored in more depth 16 of these sources, which we found to be the most relevant in addressing some or all of the key lines of enquiries.
We facilitated a two-hour online workshop with six people with lived experience of health and social care. The workshop focused on the barriers and enablers to participation, experience in decision-making, what could be done to meaningfully engage people, and what positive impact does involvement have on decision-making. We wanted to examine how the insights from the workshop reflected the existing literature.
We also sent a feedback questionnaire to all individuals who were originally contacted, some of which had not been able to attend the workshop. The questionnaire posed similar questions and asked participants who had attended the workshop to reflect on their experiences of it.
We also had interviews with four people working in health and social care policy to get a better understanding of potential barriers and enablers from the point of view of those designing or implementing policies.
What we found
Meaningful levels of participation
Participants expressed wanting to take part in all the steps of policy and decision-making or at least being informed about the decisions that followed their initial involvement. They regretted being consulted but not hearing back on the next steps or decisions made. They wanted to be included in highlighting issues, formulating recommendations, and evaluating new changes. This suggests the need for a more meaningful involvement of people with lived experience.
“Ideally, service users should be involved at all stages, and continue to be involved throughout the life of the policies…” (Feedback questionnaire)
Monitoring and evaluation and follow-ups
Participants heavily emphasised the need for follow-ups on initiatives. They want to know what has been done with their input and how the process is developing. The people working in policy also highlighted the need for a system of monitoring and evaluation (M&E). It was expressed that it can be difficult to identify the impact of work done due to different degrees of involvement of people with lived experience and limited evaluation that provides learning on the long-term impact of including lived experience on policy.
Provide training, support and resources for participants and staff
People working with lived experience need to be well-trained and hold the appropriate skills, but this is not always the case. Policymakers expressed that government staff are not trained and equipped to do participation and there is not much emphasis on developing programs that teach participation. There were sentiments that government staff may see the parliament as their audience, not the public. As a result, they deliver outcomes for the parliament, and do not think of following up on involvement and informing people with lived experience of their impact on decision-making process.
“I feel often the words co-design and co-production are just banded around are just tick-box exercises. There is no point talking to people and ignoring what people are saying. (…) If you want to genuinely provide the help and services needed, you need to genuinely listen to people”. (Workshop participant)
The research also suggested the need to “upskill people on the experiences they have”. In such a way, participants would be better equipped, and their lived experience work can be channelled through in decision-making processes. Initiatives should reserve time at the beginning to teach participants about design and what co-design is. Participants can then better scrutinise and question the work they are involved with.
Improve knowledge on lived experience and reduce stigma
People working with lived experience can deepen and develop their knowledge and understanding of lived experience and better understand the day-to-day experiences of people they work with (Mind, n.d.; Suicide Prevention Resource Center, 2020). This deeper understanding can also help to reduce stigma (Quintero et al., 2015; Samaritans, n.d.).
“It was an excellent experience — even if we did wander off-topic occasionally — and very good to hear the viewpoint of others with different/similar life experiences. I do feel that a lot of valid points were raised, and I hope that these will assist in your objective. It’s always great to discuss such things with others, as so many new or not-quite-surfaced ideas can be sparked off in the conversation, something I hope will be echoed in the policy discussions.” (Feedback questionnaire)
Systemic and political barriers
Participants from the workshop and comments from the feedback questionnaire expressed that existing UK policies and other systemic barriers prevent many from maintaining an adequate standard of living. “Westminster” was mentioned in this context as a barrier to decision-making that meets the needs of participants, and the Department of Work and Pensions (DWP) was referred to as a barrier to receiving adequate care. They heavily emphasised that not everyone has their needs met and that care should be tailor made.
Policymakers also faced barriers in their workplace to more meaningfully engage people with lived experience. They expressed that in the public sector there are many employees who are passionate about their work and want to do lived experience work meaningfully but that set ways of working and internal dynamics make it harder to do meaningful work.
One policymaker suggested creating a routine space for meaningful involvement, so that people working in policy can have more regular and easy access to public opinion and lived experience. This helps build a collaborative foundation that can encourage organisations to continue working with people with lived experience (CFE Research, 2020). However, there was also a warning against creating a routine where only the same participants engage so it was emphasised the need for approaches that mitigate this.
Eliminate financial and practical barriers to create inclusive spaces
Workshop and questionnaire participants highlighted that initiatives need to be accessible. They described that for example, in-person meetings are not accessible for all the participants and, vice versa, for some online meetings are more adequate to their accessibility needs. Thus, the participants mentioned that there needs to be a variety of options to engage. While some participants could not attend the workshop as it was not suitable for them, they still appreciated that they were able to give feedback through the questionnaire. Providing individuals with different means to participate whether online, in person or in feedback form can help those participate who might not otherwise be able to.
“We need to meet people where they are at. We should go to places where people feel more comfortable”. (Policy interview)
Participants should be compensated for their time and contribution, but organisations should carefully consider that payments could but should not interfere with participants’ income, meaning that legal requirements need to be conformed to in order to protect participants (Homer, 2019). Organisations should also provide childcare, transportation, food and other assistance to participants to minimise the barriers to participation.
Diversify engagement channels to reduce reliance on organisations
An insight that came from the policy interviews highlighted an overreliance on organisations to recruit participants. The interviewees expressed that when the Scottish Government reaches out to people with lived experience, it often reaches out to organisations who then decide who represents lived experience. Whilst this is important, as organisations have a closer reach and understanding of local realities, there was a view that these practices can stop some people from joining these organisations. Another interviewee commented that these stakeholders may end up becoming “experts and lobbyists” who “no longer talk from lived experience”.
To mitigate this overreliance on organisations, the government should work more with people who have not engaged with the Scottish Government before, and there should be a system in place to reach those who are the most removed from decision-making spaces.
“Keep inviting members of the public into meetings etc. Allowing voices from the ground to the table.” (Feedback questionnaire)
More evidence on the long-term impact
While we gathered much evidence on the impact that involving people with lived experience has on them and on practitioners and decision-makers, there is less evidence on the long-term impact that this has on policy. While there are many potential benefits such as building policies that better reflect the needs of people that use health and social care services, it is difficult to establish examples of how this happened, possibly due to a lack of long-term evaluations.
Our thoughts
This research project has further developed our understanding of working with people with lived experience and is an important step in our mission to democratise decision-making as well as research.
Reaching out to diverse groups and considering accessibility from the very start is paramount. This includes designing multiple spaces of engagement, providing childcare, language or digital support among other provisions.
In addition to clarity on roles and expectations from the start, we also need to make sure that participants’ inputs are developed and worked on with them or, at the very least, that they are informed of what is being done with their input. It is important to think of providing follow-ups to ensure that the work being done has a long-term impact.
“It’s essential that those of us with lived experience are involved!” (Feedback questionnaire)
Find out more here
References
CFE Research. (2020, September). The role of lived experience in creatin systems change. Evaluation of Fulfilling Lives: Supporting people with multiple needs. Retrieved from https://www.bht.org.uk/wp-content/uploads/2021/03/The-role-of-lived-experience-in-creating-systems-change-2020-1.pdf
Homer, A. (2019). 10 Engaging people with lived/living experience. A guide for including people in poetry reduction. Tamarack Institute. Retrieved from https://www.tamarackcommunity.ca/hubfs/Resources/Publications/10-Engaging%20People%20With%20LivedLiving%20Experience%20of%20Poverty.pdf
Mind. (n.d.). Mental health and physical activity toolkit. Guide 3: Involving people with lived experience of mental health problems in the design and delivery of your work. Retrieved from https://www.mind.org.uk/media/7595/mind-mental-and-physical-activity-toolkit-guide-3.pdf
Quintero, M., Murray, N., Connelly, E., & Ballantyne, F. (2015). Raising refugee women’s voices. Exploring the impact of Scottish Refugee Council’s work with the Refugee Women’s Strategy Group. Scottish Refugee Council. Retrieved from https://www.scottishrefugeecouncil.org.uk/wp-content/uploads/2019/10/Scottish-Refugee-Council_s-Women_s-Project-Impact-Report.pdf
Samaritans. (n.d.). From ‘they’ to ‘we’. Reflections on working as lived experience advisors. Retrieved from https://media.samaritans.org/documents/Lived_experience_advisor_FINAL_I7MmpzN.pdf
Suicide Prevention Resource Center. (2020). Engaging People with Lived Experience: A Toolkit for Organizations. Retrieved from https://www.sprc.org/livedexperiencetoolkit/about
