There were times in the summer when we worried that Andrew Craig would go pop. Such was his despair as he watched our hopes and expectations for meaningful public engagement – beware! new acronym EwPC (engagement with Patients/Communities)- go down the drain. We were concerned that his powerful titles – The Throttling Season and his one on the Big Beast – would scare off our readers to say nothing of people thinking of employing us. We underestimated our readers and these strongly worded blogs generated more comments than we have had previously. There is concern that the new proposals for public engagement lack substance and ambition – that the fig leaf has well and truly tumbled from the Department of Health PPI policy people showing the shrivelled remnant of the ‘nothing about us’ campaign of which we had such inflated expectations. Effective and( if we must) ‘meaningful’ public engagement cannot begin and end with all the PPI eggs in the two baskets of Health and Wellbeing Boards and local Healthwatches. The idea that CCGs need only touch base with these two repositories of user opinion before making their decisions is wholly misplaced.
Patient Engagement in the Real World
A reminder of what it really means to be involved comes from the blogs by Valerie Moore and Caroline Millar. Val reminded us of the realities of engaging as a patient as well as a GP patient group member – yes some things had changed but the readiness of health care providers to listen and act on the patient view still falls short of the transformation promised – still just lip service. Nowhere is this clearer than in attitudes towards reward and remuneration for patient and user representatives. In the piece Corrupting Caroline Caroline Millar reflects on the hours of discussions she has sat through as the user person in a room filled with people being paid to be there to put forward their view on why users do not come forward to join in. Some speak – others ‘earn’ their salaries in silence. The fear presumably is of contamination of the sacred and pure waters of the well of public opinion by throwing in a few coins. Would it really corrupt Caroline to pay her £50 for childcare – not that there is a space on the form for that weird need? Of course, Caroline goes on, some people automatically assume that by being Chair of a park users group, she is corrupted already.
Before the meeting began I was told by the person who is our “rep” on this topic that some of the people who would be turning up believed that I was taking back-handers or some other form of financial incentive from the Council…..My apparent willingness to work with the Council to help them gauge the views of users must surely be the consequence of some sort of corruption. There is, after all, a lot of it about these days.
This may be of course the real toxic legacy of the expenses scandal and the whiff of corruption around other areas of the national life.
Go to it Geeks!
Whether corrupt or cash-starved, user representatives always need and seldom get information that is accurate, relevant, comprehensible and generally fit for purpose. It is to be welcomed that the Future Forum is being kept alive and given a new focus on the information that patients and health service users need. One of the domains of competence that Clinical Commissioning Groups are to be held to, is meaningful (yes folks it is that word again – ITWA for the older reader) engagement with patients and carers. Why then are so many GPs going to opt out of the new primary care information scheme ? We believe in the calls for RAW DATA now but appreciate that raw data can be tough to chew. User representatives need a friendly geek or two on their side to munch through the data and develop the apps they need. Andrew Craig wants an app that brings together the info that you need to see at a glance how your GP is doing. Go to it geeks! There is a consultation on Open Data and you have until 27 October 2011 to put in your penny’s worth.
Can we be optimistic about the moves to Open Data and take our cue from a Tim Berners Lee graph in a 2010 TED talk shows that the UK government was then actually being more open than the US and suggest that in future, debates about effective (meaningful..) patient and user representation will move on from structure – Health Watch vs LINk – and become about data access and web-based pressure? Simple language without jargon would help – see a nice take-off of NHS speak in a recent newsletter from NHSnetworks.