When will we stop paying lip service to patient involvement? Can we truly say 'we are putting the patient at the centre of everything we do'?
We know involving people in creating change, be they patients or staff, accelerates the change process. This is because they both 'experience' and 'design' what needs to be different.
The NHS Institute for Innovation and Improvement supported Luton and Dunstable in trialling a new collaboration between patients and staff to redesign head and neck cancer services. Experienced Based Co-design literally takes apart the culture of the service, providing a deep understanding of the system (process mapping), the rules (often unchanged and unnoticed for many years) and importantly the experience or 'touch points', for both staff and patients.
Many patients we worked with were very satisfied with the cancer service they received, but through exploring their experience were able to identify 43 improvements to be made. This illustrates the difference between traditional approaches to measuring patient satisfaction and evaluating a much deeper understanding of people's real experience of the service.
The ability to 'see through the eyes of others' leads to a co-design process of identifying improvement areas and then putting in place new ways of working. As such it is a partnership approach, not just to planning change, but implementing it too. We have seen a substantial shift in the mindsets of the staff who have led this work.
Perhaps a step further is for each and every patient to 'co-design' their own care. This doesn't mean patients become medical experts, it is a partnership where each party brings their unique contribution to the healing process.
I have been impressed by and want to emulate a couple of examples of this culture from the US.
At the Johns Hopkins Hospital, Baltimore, their website and patient information video informs patients about their approach to the partnership between patient and healthcare professional. Its focus is on 'what you can do to help us keep you safe' and it explains what patients can expect when they come to the hospital.
Of course it not only talks to patients and their families, it reminds staff about the organisation's expectations of its employees, including adhering to best practice, for example in hand-washing, medicines administration and privacy and dignity.
Our aspiration should be mass engagement - not token representatives on committees and groups. At Cincinnati Children's Hospital, family members and patients participate at all levels of the organisation, from the organisation-wide family advisory council, to unit-based inpatient teams, to serving as family faculty who teach junior medical staff and orient new employees.
We need to shift our thinking from the bureaucracy of patient representative structures, to how we really engage patients in improving services and participating in their own care.