There are many academic articles from a variety of disciplines that consider co-production. This isn’t one of them! This piece tries to describe co-production from the perspective of living it, doing it, advocating for it and reflecting a commitment to it in all the work we do at Making Families Count.
It is easier to start with what it isn’t. Co-production is not simply about inviting people with lived experience (as patients, or service users or family carers) to meetings, or inviting them to comment on documents and processes and forms that have been drawn up by professionals. That, at best, is consultation. It’s not even about running workshops with clinicians and patients/service users and family carers. That, at best, is participation. A necessary but not sufficient condition for co-production.
Co-production involves a genuine working together where expertise, experience and power are shared. Compare and contrast
- I am invited to comment on a discharge template
- I am invited to a workshop on learning from complaints
- I am invited to work with clinicians, patients and families to develop training resources to improve care
The third is co-production. And that’s how we developed the Life Beyond the Cubicle Resources.
When organisations value co- production they make sure they hear more than a token voice. Otherwise it is very difficult to be sure of a reasoned perspective, or even a shared critical voice. And it is also important to ensure people bringing our lived experiences don’t feel alone.
There is a serious problem for families in how we are involved with the work of a Trust. Because we probably don’t know what co-production looks or feels like in practice. Why would we?
This blog tries to provide some guidance to families about what good co-production might look and feel like.
Why the ‘co’ in co-production?
We need to value everyone’s expertise. For example, think about how we contribute if we are asked to comment on letters, leaflets, forms, policies. We don’t have clinical expertise. We can comment from our point of view – which is vital. But it is only a third of the picture. The full picture needs to be developed with patients/service users and clinicians and families.
And when as families or patients we are asked what kind of care we would like or how we’d like care improved, how can we know what might be possible? We only know what we have experienced and the rest is limited by our imaginations or what we might have read about or heard about from friends – but might not apply in our circumstances. We need to be shown options in order to consider their pros and cons and to discuss them in the light of our knowledge and experience – informed by the clinical expertise of professionals.
If we are serious about co-production we have to accept that it is about more than power sharing – though that too is a necessary pre-condition. It is also about learning and developing together. This is at times uncomfortable. We have to be open to our plans developing and changing as we learn together. That’s why I often describe the process as being co-creation – to try to capture the creative nature and spirit of the process.
For example, we may start out saying what we plan to do is to improve a leaflet for the local crisis service. Along the way we may realise we need to review the eligibility criteria for the crisis service. The roles and responsibilities of the staff who work there. Their training and development needs. The operational processes used. The way they get and use feedback about their services. We may even realise that we don’t need a leaflet. Maybe we just need to improve the description on the website and give people a QR code.
How might you judge if a co-production initiative is effective?
These questions might help:
- Are you offered a fee for your time and expertise? Clinicians are paid to be there; you should be too
- Is there an equality of numbers present bringing different expertise? If you are lone voice that’s tokenism not co-production. It may not always be realistic to have equal numbers, but there should always be at least two people bringing their lived experiences as families and at least two as patients/service users so that you don’t feel alone and there are shared voices and perspectives
- Do you feel equal to everyone there? Or are some contributions given more weight?
- Are you invited to contribute to (not just comment on) agendas, terms of reference, work planned?
- Do things change as a result of your comments? And the contribution others make?
- Do you feel you can negotiate and have a constructive dialogue with participants?
- Are you learning from one another?
- Have you learnt something?
- Has someone learnt something from you?
- Have you been supported following a meeting or an event? Did anyone check in to see how you feel about it? Were you thanked for your contributions?
- And did anything change for the better as a result of this initiative? Change might take time, and some changes might be small but significant to individuals and their families. Are you getting feedback about the improvements made, including the small ones?
Last, it’s important to remember that co-production does not end when a service is designed. It continues through implementation, evaluation and continual improvement, ensuring that services continue to meet the needs they were intended to address.