Patient Power on the international stage

Back from a hectic week in London with the Health Foundation and its international fellows. First time at the International Forum (http://internationalforum.bmj.com/london/).

And a welcome focus: Josephine Ocloo as one of the keynote speakers at the Improvement Science session hosted by the HealthFoundation. Josephine’s daughter died after safety critical information was missed.

The plenary session on Thursday had another patient keynote speaker: the amazing Margaret Murphy retelling the story of the health system failing her son. In both cases hospitals did not own up to failures of procedure and both mothers have become passionate campaigners for patient safety.

Their testimonies are a strong argument for why safety needs more patients in driving seats. In her 2016 paper ‘From tokenism to empowerment: progressing patient and public involvement in healthcare improvement’ Josephine makes the case for involvement of patients at levels in the health care system where impact is measurable (https://www.ncbi.nlm.nih.gov/pubmed/26993640). A shift of power is needed when there is a gradient of hierarchy that does not promote information flow and bilateral trust. As a result those with less leverage are more likely to suffer from any system flaws. At the same time the dominant narrative of patient harm might omit key social determinants that are essential for change (https://www.ncbi.nlm.nih.gov/pubmed/20554367).

Research in this area is needed. And maybe it is coming: Nesta, the ‘National Endowment for Science Technology and the Art’ is a national innovation foundation. Nesta’s health lab is next week hosting a meeting about ‘people powered health’ (http://www.nesta.org.uk/event/future-people-powered-health-2017). On the program are innovators and patients who have taken things into their hands. Sharon Terry (https://www.researchgate.net/profile/Sharon_Terry) describes in her blog (http://www.nesta.org.uk/blog/future-health-people-powered) how she and her husband decided to provide solutions for a very personal health problem. With two of their children suffering from a rare genetic condition they decided to get involved. The Terrys went probably further then most by getting involved in hand’s on genetic research. But their’s is only another example of the increasing reach and empowerment of patients and their relatives from bearing witness, to advocacy ,to creating evidence to changing the reality of the health service.

It strikes me that often relatives seem to be a major force for better health care systems. They have the distance to see problems and the emotional buy-in to work on solutions. And might be in a better position than those who are really ill and vulnerable.

I have come out of the last week with real hope that patients are ready, up and running to make healthcare safer. Let them get on with it!

But is the real question whether relatives are the ‘third force’ for patient safety?

 

 

 

 

 

 

 

 

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