Filed Under (Francis Report, National Voices, Patient involvement) by Paul on 04-02-2013
A few weeks ago Alan Milburn outlined how he saw that one of the main outcomes from the Francis Inquiry into events at Mid-Staffs should be much much greater transparency of information about the NHS for the public outside. In 2013 very few people would disagree with that. But there will be important disagreements about what this means.
Last week Liz Kendall from Labour’s Shadow Health team spoke to a National Voices’ conference about how she felt we needed to extend transparency. One of the points she made was that the public didn’t just need more numbers about what is going on inside the NHS, but that the NHS needs a form of knowledge about what is going on inside that has been partly created by patients and the general public outside.
This is an important response to Francis because one of the main problems in Mid-Staffs was a clash about what counted as ‘knowledge’ about what was happening in the hospital.
The campaign group were sure that something was wrong in the hospital. As far as they were concerned too many people had lost their lives. This knowledge led them to know that something had gone badly wrong.
The NHS had a different form of knowledge. Looking at the internal statistics the NHS could not see what was wrong. Their knowledge told them that Mid-Staffs wasn’t really much worse than anywhere else.
The knowledge outside the NHS was right. The knowledge inside was wrong.
The first outcome of all this has to be a greater humility amongst those inside the system who believe that their forms of knowledge are always superior to that of the public. On this case they weren’t. And they won’t in other cases.
Therefore different forms of knowledge about the NHS will each have validity.
This is what I mean by the rather clumsy phrase “the NHS needs a form of knowledge about what is going on inside that has been partly created by patients and the public outside” that I used earlier.
Look at other industries. The hotel industry has for many decades had a star rating system which has gained some credibility with the public. These are based upon a set of standards which can be inspected and monitored. For many years this mattered a great deal.
Now there is a different set of inspectors, the public. The web site Trip Advisor, not only gives prospective customers the opportunity to see what others have said but to add information to the web site themselves. This is what I mean when I say that some of the information about what is going on inside the NHS is being partly created by the patients and public outside.
Patients and the public live a life outside the NHS and occasionally use their experiences. The knowledge they make available through web sites like Patient Opinion reflect their experience of what is happening inside, but is also created by their lives outside the health service.
Most medical staff, managers and regulators, live their lives inside the NHS and construct knowledge solely from that experience.
I can almost feel some of the reaction to Liz Kendall’s plea for a trip advisor for the NHS. “Don’t be absurd experiencing a holiday is a different matter from experiencing a hospital”. Well of course they are – just as they are different from experiencing a school or a home. But they are all experiences that members of the public have. And their experiences create a valid form of knowledge.
The point is that while some industries have accepted the validity of customer experience as being a part of the way in which they understand what is happening – others have not. Of course hotels still have the environmental health officers inspecting the building and its hygiene. That is still an important part of the knowledge. But so is public experience.
The same is true for the NHS. Mid-Staffs shows that on occasion not giving equal validity to the strong knowledge possessed by patients and their carers can result in the NHS as a whole getting something badly wrong.
The more knowledge we have about what is going on inside the system that has been created by people who live outside it the better the NHS will be.
As Liz Kendall said, ““Effective monitoring and regulation of NHS services really matters, but regulators can’t be everywhere. Patients and their families are. This is why we must ensure that they have a stronger and more powerful voice in all parts of the NHS and at every level of the system”