Co-production in social care: What it is and how to do it
Practice example: Macmillan Cancer Support: Community-led taskforces programme
About the project
Inequalities for people affected by cancer, and other long-term conditions, can lead to differences in:
- clinical factors, such as the quality and speed of diagnosis, the variety of treatments available, or rates of survival
- quality of patient experience, including the relationship between patients and professionals
- equality of voice, including those from frequently ignored communities
- ability to self-manage, including access to involvement, patient leadership, or peer support activities
- allocation of resources.
Macmillan’s community-led taskforces were set up to engage with seldom-heard-from groups and communities to understand sources of variation and inequalities, their impact, and how to tackle them. Adopting principles of co-production, the taskforces work with partners to understand the root causes of exclusion and what can be done about them.
The programme currently consists of four taskforces:
- A London taskforce aimed at improving outcomes for of people affected by cancer who live in London.
- A national Mental Health and Cancer taskforce.
- A national LGBT and Cancer taskforce.
- A national Older People with cancer taskforce.
The four taskforces are currently in an exploratory scoping stage, and activities include:
- engagement in research and evidence gathering to understand unmet needs and prioritise the issues
- some rapid prototyping to co-design potential solutions with stakeholders and partner organisations to identify opportunities for collaboration.
What has co-production meant to the project?
We have adopted co-production principles across the activity of the programme:
- to ensure that decision-making is shared with the people who have lived experience of the issues
- to identify more effective solutions
- so Macmillan can adapt services or design new person-centred interventions.
The principles informed the following activities:
- planning and design – a series of engagement events with people affected by cancer for each taskforce, using open space activity to draw out the lived experience of people affected by cancer and build consensus about the most urgent issues.
- decision-making and resource allocation – the programme includes a small grant scheme for activity to further scope and develop the solution areas, which taskforce members will help to allocate.
- co-delivery and evaluation of the programme – convening a reference group of people affected by cancer for each taskforce to help deliver the work of the projects. This has included designing surveys and carrying out peer research, analysing data, co-writing reports, planning and facilitating the engagement events.
What has helped in implementing a co-production approach?
Through a series of engagement events and meetings of the reference groups, Macmillan staff work with participants as equal partners to set the lines of enquiry for each taskforce. Where possible, participants’ roles have built on their existing capabilities, for example, making use of expertise and skills from employment in research or nursing. Where possible, we have also worked with participants’ own peer and personal support networks as well as those of professionals, inviting taskforce members to disseminate surveys through their networks and carry out stakeholder interviews in their local areas.
The use of open space approaches at the engagement events allows everyone to voice their views, and skilled facilitation allows for all voices to be heard until a consensus is reached. With the taskforces we have tried to value the people who have taken part in several previous initiatives. In many cases they have formed the project steering groups or taken on other leadership roles with the taskforce, like welcoming and briefing newer and less experienced members.
By asking participants to complete a brief feedback form after each engagement event, we have been able to monitor what people say they get out of being part of the programme and build on these elements where possible. Based on feedback that participants value the opportunity to connect with others, we ensure plenty of time for networking at engagement events; and where consent is given, facilitate members to keep in touch outside the meetings. It is an important principle of each engagement event to make sure they are fun, and the quality of the venue and food is good, so that participating in the taskforce is a good experience
Other things we found helpful were:
- ensuring the use of plain English in communications
- keeping people not able to attend events informed using regular e-bulletins
- providing any training required to participate equally, including training older people in interview and questionnaire design to carry out peer research; and facilitating an open-coding session to analyse results.
What are the main strengths in the approach that has been taken?
Involving people affected by cancer from the start can identify opportunities for community-centred sources of support, outside the formal care system. It also gives us the confidence that we are acting on the issues that are most important to people affected by cancer.
We use a broad definition of ‘partner’ to include anyone with an interest or a stake in the issues being addressed, and includes people affected by cancer, professionals, academics, voluntary and community-sector organisations, and public service providers. Involving partner organisations and professionals as well as people affected by cancer from the start of the process has identified opportunities for collaboration that may have been missed otherwise. Including these different perspectives has also helped to prioritise and focus on the root causes of issues that need to be addressed.
What have been the main outcomes of the project?
The older people’s taskforce has ensured a focus on post-treatment support in the recommendations of the clinically-focused expert reference group, which members have said they would not have considered without older people’s involvement.
Taking a co-production approach with people from London from the start of the project, we have been able to identify sources of support and opportunities for improving the lives of people affected by cancer that are based in the community rather than the formal care system (such as peer support opportunities, and potential corporate and voluntary sector partnerships). Financial modelling of the solution areas suggest they could provide financial savings as well as improved health outcomes.
Taskforce participants report benefits of taking part in the taskforces, including having the opportunity to use their experience of cancer to improve services, increased knowledge about their cancer experience, and opportunities to meet and build relationships with others.
Baseline surveys have been completed by taskforce participants so that we can measure any future changes in factors such as confidence, self-esteem, social network satisfaction, openness and ability to confide in others, feelings of being able to influence the system positively, make a difference to others and other factors of importance to participants.
How has the project worked to engage all sections of the community?
We have deliberately tried to engage with the most excluded within each community or group. For example, holding separate focus group sessions for people in secure mental institutions; and specifically engaging with transgender support groups and community organisations.
Using online surveys and interviews, we have involved a broad range of other stakeholders in the scoping phase, such as academics in LGBT research or mental health, professionals from different medical disciplines, and entrepreneurs and businesses in London.
All expenses have been paid for travel and accommodation of participants if needed to try to alleviate financial barriers to engagement.
Taking a flexible approach to membership, and participation is crucial, allowing people to join and leave the group as they need to; and practising the ‘law of two feet’ in working together, so that people only work on a topic they are interested in.
Where necessary, special arrangements have been put in place to ensure accessibility to all. Examples include an individual recently released from section under the Mental Health Act, who needed to be accompanied by a carer, and providing additional safeguarding support for a young person who wanted to participate.
What advice would the programme give to others?
Allow plenty of time, and enough budget, for engagement events to build trust between participants. We have learnt that it typically takes between three and five meetings to define and prioritise the issues they would like to tackle.
Take an iterative approach to ongoing engagement, and ensure you are adapting to the needs and wishes of the group.
Focus on the experience for participants to ensure they keep coming back.
Use engaging digital channels (such as mailchimp) to keep a broad range of stakeholders informed of your work.
Be flexible in your approach to engaging with different sections of the community. Be prepared to go to where they are, attending community meetings; and even commissioning community organisations to run engagement events for you.
A safeguarding policy was developed to ensure all participants of engagement events had in place emotional support should they need it. Preparation for engagement events have included safeguarding guidance facilitators and staff at engagement events; as well as recruiting a volunteer counsellor for each event to provide emotional support in case of distress.
When holding engagement events, find venues in the community you are working with to increase accessibility, and work with community partners to ensure your event is accessible. For example, holding LGBT engagement events in offices of the LGBT Foundation to ensure as far as possible that participants feel comfortable to attend.
For further information contact:
Inclusion Partnerships & Change Lead, Macmillan Cancer Support