‘Real Patient and Public Power’ based on prising the lock off comparative data in the NHS
Posted: 3 May, 2009 by admin
Access and Understand Data
Knowledge is power – but only if you know how to use it. MAC champions the ownership of data by the service users who generate it so they can make decisions and choices based on their and others’ experiences. This means they must not only have access but also the tools to make use of comparative data.
Avoid Unnecessary Deaths – Pay Attention to Patients and Families
More reports appeared in recent days into the deadly debacles in Mid Staffordshire: clinical, managerial and governance failings at the local Foundation Trust Hospital; shortcomings by PCT commissioners and pretty much everyone else – except of course the patients and families using the hospital who weren’t listened to in the first place. As David Colin Thome’ makes clear in his report, “national approaches were being followed but local signs were missed”.
He concludes: “Real patient and public power, information and choice are strong drivers for improving the NHS and making it a dynamic, responsive service rather than a service that gives patients the message that they should accept what they are given. Patients should be seen as equal partners in their own care described as ‘the meeting of two experts’ when a patient meets their clinician.”
Unlock the Data Treasure House
When these “two experts” meet they must have access to the same data. To make this happen, we say prise the lock off the treasure house of data in the Information Centre’s “NHS Comparators” resource and provide public number crunching units so people can relate the comparative data to their local situation and inform their potential choices.
Interesting question about data and how much it is key to patient involvement. My sense both as a GP and from our experience at Patient Opinion is that it is indeed important but only one part of the puzzle. The reasons for this are partly due to the issues laid out in your blog about Christine Hogg’s book on Citizens, Consumers and the NHS: capturing voices Health care is not like other products due to its asymmetries of power, information and vulnerability. Comparative data rebalances the informational asymmetry some what – but not in ways that patients often feel are important or understandable.
What patients and carers DO feel competent to comment about is their own personal experiences – hence David Colin Thome is right that hospitals should ‘listen more’ to patients. The question – despite the all the policy documents from Darzi and World Class Commissioners – is how to do this in cost effective ways. Surveys and handheld devices, surveys and user groups won’t make any difference if the NHS sees the output simply in terms of more data.
Hurrah since posting this piece, there’s been some significant movement locally on getting inside the NHS comparative data treasurehouse. Our PCT has made a first attempt to rate the performance of all primary care practices against a range of indicators. This will allow comparisons to be made and will facilitate patient choice, for example when people move into the area and wish to register with a practice. The “primary care balanced scorecard” is also a tool to support commissioning and decommissioning of services in particular practices on the basis of performance evidence.
We agreed to include QOF (quality and outcomes framework) performance in the indicators and to validate the scorecard with the practices before publication. We will reference our data sources. After validation, a consumer friendly version of the comparative table will be published and publicised.
MAC strongly supports such developments because they will allow service users – intending ones and existing ones who wish to change practices – to make meaningful comparisons between local primary care providers. When published, the PCT should promote the information widely and explain how to use it to make choices. It should make clear how well a practice engages with its patients, whether there is patient participation group etc. A consumer-facing “dashboard” presentation of this information should be trialled with potential users to test comprehensibility, omissions, ambiguities etc.
The initial indicators used to compare practice performance are described in Attachment 4 of the May PEC papers http://www.wandsworth-pct.nhs.uk/news/board/boardreports.asp?expid=164