Francesca Creighton Griffiths is the RCP Patient and Carer Network (PCN) representative working with one of the Future Hospital development site teams leading a respiratory service redesign project across central and south Manchester. Here, she outlines how their multiprofessional group are involving patients in their ambitious, complex work.
What does patient involvement mean?
When I took on the post of a PCN representative for the RCP, I did not expect my biggest challenge to be fathoming what ‘patient involvement’ means. It’s there for all to see: ‘Care should come to patients and be coordinated around their medical and support needs.’
Following the 11 principles of patient care outlines in the Future Hospital Commission report, patient and carer experiences are a fundamental aspect of all eight Future Hospital development site projects. Surely then, it must be clear what patients need to do and how to do it?
The challenge: what is important to patients?
As a member of the central and south Manchester respiratory team (a Future Hospital development site), we set ourselves the ambitious task of understanding what is important to patients and carers. We want care to be joined up: care that meets patients' needs by bringing together services from a number of large and different organisations.
We hoped to embed patient views at the heart of the project from the outset. With Manchester’s diverse and global population, I wondered how on earth it could be truly representative.
Our approach to patient representation
We established a patient experience subgroup to focus on how we would set about discovering the views of the people with chronic respiratory disease. We wanted to know more about the care they have experienced from their GP, their community health services and in hospital.
We patients are individuals and have diverse views; our views are not fixed – they are dynamic and can change.
We knew we needed to avoid being simplistic about the views of patients at all costs. As we all know from our own life experiences, we patients are individuals and have diverse views; our views are not fixed – they are dynamic and can change.
A challenge the team have faced is finding a balance with their approach. We want to be accessible for patients but still use methods which allow the team to gather meaningful data.
We acknowledge that truly understanding patient experience is more than a single survey or tick box and we have moved towards collecting a mix of quantitative and qualitative data. We’ve settled on a range of methods from questionnaires, interviews, and feedback from co-production days.
Our challenges: facilitating co-production
We’ve made great progress on designing questionnaire and interview schedules and sorting out how it’s all going to happen. Two amazing co-production days have been held. However, despite our best efforts, we struggled to attract a range of patients to these events. This raises some important questions:
- How can we get people with chronic respiratory disease to fill in questionnaires, participate in interviews and attend co-production events when they are feeling ill (or even when they are feeling well)?
- Some people are easier to reach than others: do we know who we are not reaching and do we have any idea what the views of those people are?
What we have learnt
- Achieving real patient involvement is challenging for all of us – yes, even patient representatives!
- Resource and time from all quarters is limited for patient involvement.
- Patients don't necessarily want to be involved in healthcare design.
- People don’t wish to be defined by their health or lack of it.
- People who have chronic illnesses are just that – people who want to get on with their lives as far as possible.
A vision of effective patient involvement
We are aiming to work more effectively together with patients so we can create better healthcare. Achieving this more equal and truer partnership is easier said than done.
We are adapting tried and tested methods, such as questionnaires, interviews, and group meetings and are open to exploring novel and creative approaches to reaching people who happen to have an illness.
The big question about co-design of healthcare services for all of us is: what do we need to do to embed this as the norm for the future?
To find out more about co-production, read the FHP’s interview with Catherine Dale, programme manager for patient-centred care at King's Health Partners Comprehensive Cancer Centre.
 Evidence-based co-design toolkit (EBCD), the King’s Fund: ‘EBCD involves gathering experiences from patients and staff through in-depth interviewing, observations and group discussions, identifying key 'touch points' (emotionally significant points) and assigning positive or negative feelings.’