Partnering with patients on ways to improve care before treatment

In 2023, a group of Q members formed the Perioperative Care-Prehabilitation group and began working with Macmillan Cancer Support (Macmillan), the Centre for Perioperative Care (CPOC), and the Wessex Cancer Alliance. While much has been done in the design, development and delivery of perioperative-prehabilitation of care, this group of members wanted to create an online forum for those working in this area.

With support and funding from Q, the group’s aim was to create a community of those involved in perioperative and prehabilitation care to collaborate and share knowledge.

Perioperative and prehabilitation care involves supporting and optimising peoples’ physical and mental health in advance of, during and beyond treatment for cancer and other long-term conditions.

This approach aims to turn waiting lists into preparation lists by making better use of screening and empowering patients to take control of their wellbeing. It has the potential to reduce cancellations, complications and hospital bed delays. It helps to tackle waiting lists, improve patient outcomes and boost efficiency.

The group wanted to involve people with lived experience and health and care professionals so they would be able to collaborate and share knowledge and expertise. 

Encouraging conversations between those with lived experience and health professionals

Perioperative and prehabilitation care involves multidisciplinary teams and the group knew that they needed to invite a diversity of views to reflect the complexities of the patient pathway.

This forum is an open, inclusive space for debating new ideas and approaches, supporting, and influencing policy and looking at ways of enabling shared decision making between patients, family and health professionals.

Through the forum members were able to share high quality patient information and educational resources and look at emerging research themes to inform clinical practice. Health and care professionals and those with lived experience of perioperative care from across the UK were able to have rich, broad discussions about this.

The group’s vision is to continue learning and sharing across different regions, and to widen this forum out to the four nations – and potentially include international partners.

As the group moved through the first year of the project, they came up against several challenging areas. Each of these was an opportunity to learn and grow together.

Patient and public involvement

One of the group’s aims was to see the role of patients expand in the forum, specifically for it to be a place where patient leaders can come together to co-produce prehabilitation services. A challenge has been finding patient stories to share in their webinars, as a way of inspiring and motivating health professionals to consider new approaches informed by patients’ and carers’ lived experience. They are fortunate to have Lawrence Mudford as a patient representative, who continues to be active and engaged with them on this area.

Time and resource management

The project found that they needed more administrative resource than they had anticipated to run the group and its activities. Their clinical partners face the added challenge of protecting time for this project while having to meet ongoing workloads.

While they recognise that these are not easy challenges to overcome, one of the strengths of this group is the breadth of knowledge and lived experience of its members. They will draw from this to adapt and work through each of these areas.

Platform usability and engagement 

This group was initially set up on Q’s previous website and they know from feedback that the community found the online platform clunky, particularly those using mobile devices. For example, posts from new users pushed other posts down the page. This made it difficult to see posts when users first logged on.

While they have been able to share best practice and experience, they are also aiming to try new approaches to engagement. 

With the new Q platform they hope to see an increase in engagement levels as they develop and share new information, and explore the platforms improved functionality.

Grew the perioperative prehabilitation community network

The dedicated forum stands at 236 members and growing. This has widened engagement and broadened the conversation across perioperative-prehabilitation care.

Delivered a programme of webinars, blogs and articles

Members wrote about a range of perioperative and prehabilitation topics, usually in the form of blogs and articles. These have been shared both within Q and across the wider health and care community, including with Macmillan and CPOC.

The group hosted 12 webinars across a range of topics, and plans to continue this programme of work in the coming year.

Broadened awareness of emerging research and approaches

Through their journal club, the group promoted literature about prehabilitation, increasing the guidance and research available to members. To date, 14 journal papers have been discussed.

Contributed to national guidance

Members had the opportunity to contribute to the refresh of National Prehabilitation in Cancer guidance. The group will continue to share opportunities like this as they arise.

Better align time and resources to our requirements

The group now has a clearer understanding of the level of administrative support they need and the time constraints on clinicians. They will work with Q to explore funding options for administrative support and consider how to optimise time with clinicians.

Co-produce engagement and communication

They intend to use stakeholder surveys to better understand the needs and expectations of users.

Build on the momentum of the group to widen their network

They have a strong foundation for expanding their membership. In the coming year they will be inviting members from Wales, Scotland and Northern Ireland to be a part of the work to improve perioperative care and patient outcomes across the country. 

They will be using the infographic of their achievements to publicise their work and will be exploring how to promote the group to patient and public involvement groups to widen its membership amongst patients and carers.