We talk to PIF co-founder Mark Duman about why PIF was started, the need to understand patients on an individual level and fully integrating health information provision into health and social care delivery.
What was the original impetus behind PIF?
I had the fortune of being an ex-pharmacist who had joined The King’s Fund. We were running a programme called promoting patient choice. And a fundamental part of patient choice is obviously having information to support decision-making.
As Nelson Mandela would say, it's all about education, education, education. We cannot have choice or shared decision making or personalised care planning, or all the stuff we now talk about 25 years later, without providing good information to patients, carers and beyond.
When we looked around in the mid-90s, the information that was given to patients, if they were given information at all, was often at best typed up notes from a consultant. If you asked, ‘is it evidence based, is it clearly communicated?’ they would say ‘of course it is because I’ve written it’.
With the best will in the world, medics know a lot about medicine, but not necessarily about patient experience or communication.
We began to think something needs to happen about the quality of this information.
We made visits to various hospitals and, even where there was good quality information, the access to it was variable. There was also questionable information where its provenance was not quite clear, it was not necessarily unbiased or patient centred.
With all those caveats and information needing to be at the bedrock of choice and engaged patients we thought let’s set up a little organisation. Patient information officers from hospitals around London came together and we charged £25 a year for membership under the auspices of The King’s Fund.
From there we have grown and grown. So that’s the origins of PIF.