The Third Wave
We are entering the third wave of patient power in healthcare politics. A rights-based user and civic movement focused on accountability in the 70s and 80s gave way to a more institutionalised form of patient engagement. This has focused on ‘feedback’ and ‘representation’ that aimed to improve quality. But it has mostly hit the buffers as people realise it is still predicated on ‘child-parent’ relationships and preserves decision-making power in the hands of the professional elite.
Now, the emergence of ‘patient and community leadership’ is all about what we bring – our assets – as people individually and collectively. This has given rise to myriad forms of engagement – ‘patient entrepreneurs’ inventing apps and developing innovative kit, digital whizz kids utilising online fora to harness collective voices, community and health champions bringing in the marginalised, peer support workers delivering a different sort of care and patients/carers influencing healthcare design, research, education and training.
In my world of health care commissioning and provision, the old rules of engagement are breaking down. People affected by life changing illness, injury or disability or living with long term conditions want to be trusted equal partners in their own care, and perhaps more significantly in co-designing and co-delivering services.
We can help reframe problems, bring our insight to bear so as to develop new solutions, shift policy and practice, change dynamics and model a new form of collaborative leadership. This will help accountability, transparency, quality and safety. But only if we are valued.
Source: Future Patient