What is co-creation?

Many of the projects featured on hEDStogether involve co-creation, but this might be a concept many are not familiar with. To really appreciate what co-creation is and what it does, it deserves a blog post of its very own.

What is co-creation?

Co-creation is a philosophy and methodology based on the collective participatory process. The aim is to initiate a process of change, while involving various individuals in the ideation and development process. The goal is to produce a solution that is not only effective, but one that also ensures relevance, usability, availability and sustainability.

Or to put it more plainly, its simply about working together. Ensuring you involve the most diverse group of people possible throughout your project with a variety of backgrounds, skills, and a range of experiences. It is a recognition that everyone is an expert of their experiences, and have insights that are not just relevant, but may also be vital to the project’s success. By utilising this resource to its fullest extent, it allows for the development of possibly fresh, new, and novel ideas that may not have otherwise been created.

The necessity of co-creation however, is not just limited to facilitating a successful project outcome. Co-creation is important. People have a fundamental right to take part and have a say in the things that are being developed for them, and so they should be included throughout the entire process. By using and citing co-creation specifically within your methodology, it allows this important value to be embedded within the very core of your practice.

This principle, however, is not new or original. Involving people who receive, deliver, oversee or fund services or products is a concept that has been in practice for many years, especially in the field of design. Yet those that try to incorporate this method often don’t use it consistently, or to its full potential. It is more than just consulting people to see if something you have decided is good as a tick box exercise. It is about involving a range of people that can provide a barrier or success to the project right from the beginning when the ideas are being created and the problems to solve are being identified. It is not just about co-designing or co-producing something after you have decided what problem should be solved, although these aspects can be included in the co-creation process. Co-creation is a more overarching approach and way of working with people.

Spelling CREATE

How do I find out more about co-creation?

You can see examples of co-creation projects carried out within the hEDS together team through the co-creation of our maternity tools for people with hEDS/HSD and the co-creation of a cardiac rehabilitation service for people with PoTS.

If you would like to learn more about co-creation, Dr Gemma Pearce, who leads the hEDS together research group, is working with hEDS together members, Nikki Holliday and Paul Magee, to deliver an educational course called ‘CoCreating Wellbeing’. This is currently available to attend for free because it is funded by Erasmus+, the EU’s programme for training in the fields of health, education, youth and sport. It will be starting in June 2023 with online learning that can be completed at a time convenient to you, followed by a face-to-face day workshop on the 7th July at Coventry University. The course will include information about co-creation definitions, theory, top tips and how to actually do co-creation. The face-to-face day will also provide you with the opportunity to network with others interested in co-creation. If you would like to attend the course or find out more, please contact Nikki Holliday (Nikki.Holliday@coventry.ac.uk).

The CoCreating Wellbeing team are also in the exciting process of developing reporting standards for co-creation research. This will help to ensure that co-creation has quality standards agreed by co-creation experts. The aim Is to prevent people saying they have co-created something, when they have not done co-creation properly. You can find the protocol for this here.

You can learn more about the CoCreating Wellbeing project here, as well as find resources from the previous linked CoCreating Welfare project. These resources include keynote talks, educational materials and publications on co-creation.

Blog written by Gemma Pearce and Sabeeha Malek

Stay up to date

Follow us for the latest on hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders.