Raw Data Now! What do we want? Raw Data Now!

Partner Craig sent us an email recently where he professed himself baffled on how information on GP performance in Wandsworth got published:

Strange. Somehow this got published even though it was never officially launched and was still being worked on when I was last involved with it in April this year. Was I asleep? I think LINk put it out anyway. There is a feature on it on the LINk site dated last week.

Anyway, a more useful version is here and a version with rather different categories went to the (Wandsworth) health and social care OSC at its meeting earlier this month.

And I have been having correspondence (with nobody you will know dear reader) about why this was NOT published yet and what could be done to break the logjam. It really is Alice in Wonderland I think.

….Put together these two versions give us an interesting picture – from the standpoint of what interests the user and potential patient – about access, advance appointments and other key issues about “what good looks like” across the 46 practices.

There are two surgeries with a 97% satisfaction score – one is our old friends at the Balham Park Surgery where Partners Craig and Moore helped Natalie Goldsmid-White the Practice Manager set up their Patient Liaison Group many moons ago now.

Are we seeing the first hesitant and rather disorganised steps to getting people aware of and interested in using good data to unlock the information key to better healthcare for themselves? Is the real revolution in the health service happening while pseudo-battles range about structures and processes which citizens, patients, carers are learning how to by-pass? Today’s paper ( 7th July 2011) tells us that more clinical information on death rates for specialist surgeons and also prescribing rates for GPs are to be published for the first time from December. The usual ‘doc orgs’ are worried about ‘simplistic league tables’. Wandsworth are to be congratulated for being one of less than 10 PCTs to give this information now. And the word is that the Department of Health plans to stop funding audits which do not allow the public to make comparisons

I was given a context for this triumph for the march of openness even if it was achieved by unknown and back to front means by looking at a couple of TED chats on how the web is moving on from text to data. None other than the great guru T B-L himself called for “Raw Data Now”. Data is relationships and understanding the power of the links took me to another TED talk where Dave Debronkart talked about the patient as the great underused resource. He found a cure for his cancer thanks not to doctors but expert patient groups who knew where the data was and could use it and point him to it. He harked back to hippy history and the medical editor of The Whole Earth Catalog (whose got my copy?) who is still going strong – shorter hair, bigger gut – and who recently compiled the profile of the e-patient in the spirit of the subtitle of the Catalog – access to tools.

The E-patient is:

  • Equipped
  • Engaged
  • Empowered
  • Enabled

and the key to all this is access to data which will be accessible to us across all platforms. Just as T B-L used the language of html to make documents accessible, we are now seeing the invention of a similar platform to link data. The crucial distinction is between the data and information. Information is edited and tailored by the author or editor to make their point: data is raw, unfiltered and unrefined and the new epatient can use it how they like.

Will the citizens of Wandsworth use the GP data? How will the new commissioners publish their data – will they show the data to foster participation in their decisions or will they just give us the information that supports their decisions?

The Moore Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing.  Feel free to contact us to discuss the opportunities.

Comments

  1. Andrew Craig says

    According to the Kings Fund, fewer than 10 PCTs – when we had them – have made comparative information available on their websites so choosers and changers could at least get some sense of how practices compared on the things that matter to most users: namely getting through on the phone, making appointments in advance, ability to see a GP in two working days, extended hours, an overall ranking of other patients’ satisfaction with the practice plus some key indicators like MMR and flu vaccine uptake.

    If NHS London ever manages to complete its template project and manages to bury these top line consumer-friendly things it will be doing a dis-service. Too much data up front will defeat the object of the exercise but it should all be accessible for anyone who wants to see it.

    And why has it taken so long to get this far? Ask the LMCs in most places. Let people choose and change and vote with their feet so the poorly performing practices feel the heat.

  2. says

    Thanks for sharing / highlighting Colin.

    The first two columns “Satisfaction with care received at surgery” and
    “Ease of Getting through on the phone” figures are presented as percentages.

    Are these two data-points in fact “scores” and should not be a %? 97% satisfaction is excellent, or is this everyone who answered the top half of the scale?

  3. Dave West says

    Hi both – In January HSJ found only six PCTs were publishing the scorecards they had produced – the finding used by the King’s Fund – http://www.hsj.co.uk/primary-care/one-in-five-gp-practices-are-underperforming/5023862.article

    Dan – I believe these are from the GP Patient Survey which would mean the % is probably a % of people answering “yes” to a question.

    On which note, and in relation to raw data, I think there is a difficulty with what exactly is raw. GPs and reps have been sceptical about GP Patient Survey results (I think with some justification). You could possibly argue it is information because it is shaped by the question and also by the means of presentation.

    Similarly with clinical indicators you can argue the toss between the various ways they are measured, chopped, analysed etc.

    And also debate which indicators are measured and reported. The scorecard is presenting a small subset of information from the Patient Survey and from national collections.

    So you might dispute how much it is raw and how far it is necessarily shaped information? I guess that is why it gets complicated and there is a process of agreement with the LMC.

  4. Colin Adamson says

    The raw data ideologues are very keen on the distinction between information – worked data – and raw data which flows unimpeded, unfiltered and unmanipulated to the crowd. Alas the crowd does not know how to mash it up without skilled help and the helpers then become information manipulators. I am not quite sure how to get out of this – there is a need for trusted intermediaries. Would organisations like Consumers’ Association fit the bill? They would need to make some money doing it of course.

  5. says

    It feels to me like there are will be lots of intermediaries, mainly professionals/groups, government and technologists, and getting them to be more trustworthy would be a good start!

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