Table 2.
Name of Project | Description of the Project |
Challenges and Enablers to public involvement, and Lessons Learned |
|||
---|---|---|---|---|---|
The context (setting and initial resource) | Nature of public involvement (how many, where from e.g.. charity, advertisement in general practice) | Key challenges/barriers | Key enablers/facilitators | Lessons Learned | |
JIGSAW-E | The implementation of National Institute for Health and Care Research (NICE) guidelines in UK and European countries [23] | Patients and public members for general practice with joint pain and osteoarthritis recruited by healthcare professions | Differences in healthcare settings; differences in the way in which healthcare is delivered; different levels of empowerment of patients within the general practice setting | A Community of Practice (CoP) approach; flexibility and adaptations of innovations for the context; reimbursement offered; support of a knowledge broker and coordinators | Context of healthcare systems across different countries drives differences in approach so flexibility and a CoP can be powerful facilitators |
The Duo Trial: | A pragmatic cluster randomised controlled trial to investigate the additional value of duloxetine as a third-choice medicine in the treatment of hip and/or knee osteoarthritis [35] | Three patients asked by GP to be part of the study throughout. Twice yearly face to face meetings were conducted between the patients and the whole study team with regular communication via email. |
Identifying patients willing to be involved Funding the patients due to institutional rules and processes |
Liaising with general practitioners for help identifying potential public engagement contributors as they saw relevant patients regularly. Face-to-face meetings twice a year facilitated the relationship and the engagement of the patients with the project team. The same people were involved throughout the project, so no new introductions were needed, which made it possible to stay within reasonable time to discuss the points on the agenda. |
Start with a small group if you are inexperienced, invest in building the relationship, make agreements on time, way of contact, rewards and enjoy the extraordinary ideas of laypeople and discuss how they can improve the project. |
BeeFree | A project to support better awareness, identification, and management of mental health problems for people with persistent neck and back pain. Collaboration between NHS musculoskeletal and mental health services, Keele University, and charities (Mind mental health charity and the Haywood Foundation). £2,000 initial funding from Q Improvement Lab (Health Foundation) to design a prototype animation for waiting rooms, pilot training event, community of practice, and mental health information repository. |
Eight public engagement members (hospital volunteers and patients) were part of the launch event which set out the ambitions for the community of practice. Public engagement members were recruited through existing networks. Public engagement members co-produced initial suite of resources, mapped their own networks for eventual implementation of resources. Public engagement members were key to securing additional £100,000 funding to professionally develop the resources within a bespoke brand and to move the test area out of one hospital service into a broader geographical area, through a commitment to being involved in testing and evaluation of the pilot resources and co-creation of final versions. | Working with a relatively small amount of funding initially as this was needed to develop resources and reimburse public engagement members’ time Conducting meetings online due to Covid meant that public engagement members needed extra support |
Involving public engagement members from the start encouraged ownership of final resources and a desire to promote and use them in their volunteer and patient networks Public engagement members were a key part of the community of practice (a group of people coming together who have a like mind to solve problems creatively and collaboratively) and were considered equal partners alongside commissioners, managers, and clinicians. This enabled them to drive forward implementation relevant to their own contexts. |
It is possible to use small amounts of funding (in this case £2000) to springboard further funding applications to scale up projects (£100,000 awarded) by including public engagement members at the heart of the project. It is important to develop 2-way, reciprocal, enthusiastic relationships with patients and the public and invest time in these to understand their contexts, drivers and priorities. Knowledge brokering between all stakeholders (clinicians, patients and the public, academics) is important to facilitate co-creation of resources. |