Reclaim your own experiences – users must reclaim and use the information they provide

“Text cloud” for this post below, created by www.wordle.net

Best Tool in the Box

I was talking to the guy the other day who runs Passenger Focus the organisation that represents the views of rail users – let’s call him Smith. The organisation has been through a lot of change in recent years in creating a new identity and ways of working for itself outside the Consumer Focus big tent. Just today I see that Geoff Hoon (now Transport Minister) announced that Passenger Focus was to represent air travellers as well so he must be doing something right. He told me the most useful implement that he had grabbed for his toolbox and one which he turned to most days as he stood on the footplate of his new policy locomotive, was the annual National Passenger Survey. The survey previously had been the property of the Strategic Rail Authority. Now it is where it belongs in the hands of passenger representatives.

Stand-out Issues

With a few moments study, you can see that while overall satisfaction with trains and stations in London and the South East was much the same as the national average (what’s the problem?), three issues stand out as having lower satisfaction rates – value for money in fares, availability of staff and how delays are dealt with.

Evidence-based campaigning

Smith is a great one for evidence-based campaigning and the possession of this comprehensive dataset – soon to be extended to buses and beyond – is the keystone of this approach. I agree completely – so few consumer representatives have access to facts about those they represent that are up to date, comprehensive, comprehensble – in a word actionable.

Yet is this not their fault? In the health service at least, there is now a mass of data collected from users that should in theory let them rate their health and social care services – anything from a hospital to a GP, a care home to the local authority.

According to Joshua Rosenberg SVP Product Management Google:

When data is abundant, intelligence will win
Putting the power to publish and consume content into the hands of more people in more places enables everyone to start conversations with facts. With facts, negotiations can become less about who yells louder, but about who has the stronger data. They can also be an equalizer that enables better decisions and more civil discourse. Or, as Thomas Jefferson put it at the start of his first term, “Error of opinion may be tolerated where reason is left free to combat it.”

Actually in my experience of consumer representation, when data is abundant, people get confused. Not a surprise since few are well-trained. Anyway conversations without facts are much more fun. Consumer advocates can get resentful if they feel that possesion of research-based facts downgrades what up to then has been their major skill – making consumer issue bricks out of emotional and anecdotal straw. Power drains away from the untutored lay representative to end up with some smart-arse researcher in head office who can talk about survey bias and sample weighting and such like. Indeed Passenger Focus has faced the logic of that and done away with boring old consumer representatives entirely.

Facts + Feelings

The truth is that this is the new game and consumer representatives have to marshal facts to back up their emotional commitments to causes dear to them and others. So how easy is it for users of health and social care and the bodies that represent them?

We are dealing with an apparently much bigger business here but compared to the 25 TOCs, the operating units are much smaller and numerous. Data collection for a survey that covers the waterfront of these services is a monster task – MORI heard from almost 2 million people for its 2008 GP Patient Survey (In England it sent out almost 5 million questionnaires). Passenger Focus gets about 30,000 completed responses. Response rates are about the same – 37% for the rail users, 41% for the GP survey. But this is deceptive. But never mind the millions – think small. This apparently huge business when you come down to the GP service or even at Primary Care Trust level is an aggregration of small businesses – some still with one or two GP s. Hospitals are bigger business.

QOF your QMAS: a toast to NHS use of user data

So the patient representative who wants to understand how local GP s are rated has to dissagregrate a mound of data. They have some homework to do. The NHS Information website tells them about QOFs and QMAS. QOF is a quality of outcome framework and the published QOF information was derived from the Quality Management Analysis System (QMAS), a national system developed by NHS Connecting for Health. QMAS uses data from general practices to calculate individual practices’ QOF achievement.

QMAS is a national IT system developed by NHS Connecting for Health to support the QOF. The system calculates practice achievement against national targets. It gives general practices, primary care trusts (PCTs) and strategic health authorities (SHAs) objective evidence and feedback on the quality of care delivered to patients. You will certainly need a drink after trying to make sense of that.

And the irony is that this data while based on user responses, is then absorbed into larger measurement systems designed for health care system management and not users. The user cannot use the information to base their choices on even if they are a stats whiz.

If a LINk wants to use local data whether for health or social care, it needs access to a skilled resource who can first deconstruct and then reconstruct data fit for that purpose. Any local LINk has to look out the data for say 30 odd GP practices available as a spreadsheet from their friendly PCT. While they are at it, they have to find out whether the practices have done any other surveys such as the IPQ survey and what have they done with that data? Check out those patient survey indicators which tell you that points have been awarded for doing this and that and that in the words of the quiz show ‘Points mean Prizes’ – in this case money.

And we have not even got to the Care information – look at the old CSCI Annual Performance Summary. Where is the user data in that and how is it gathered and interpreted for the assessment?

Finally if you are battered by the prospect of all these statistics and want to find out what the people actually say for themselves, you might find your way to sites like Patient Opinion collecting the stories from us the users. Except that very few of us actually bother.

This apparently contradicts the Google man’s other view:

“Everyone can publish, and everyone will

One thing that we have learned in our industry is that people have a lot to say. They are using the Internet to publish things at an astonishing pace. 120K blogs are created daily – most of them with an audience of one. Over half of them are created by people under the age of nineteen. In the US, nearly 40 percent of Internet users upload videos, and globally over fifteen hours of video are uploaded to YouTube every minute. The web is very social too: about one of every six minutes that people spend online is spent in a social network of some type.”

Spot the clue: the age of those who create blogs. This form of electronic self-recording in public is a young person’s game and guess what – most of them are healthy. Us oldies have yet to shed our reticence especially about illness. There are of course expert patient groups and sites that give their views- you can get a flavour here.

Citizen Mash Up

But how about the rest of us? Take a look at this clip http://www.youtube.com/watch?v=InI5n3NTvR4 based on a new unit in the Obama administration where technology is being used to encourage citizens to put their own proposals in a citizens’ briefing book and also ‘mash up’ ie rework data that their tax dollars have paid for to further their own ideas and interests. Participation thanks to technology is the golden goal.

Campaign to Reclaim Our Data

MAC will lead the campaign called ‘Reclaim our Data!” where users of health and social care services who provide all the responses for those millions of questionnaires get their data back in a way that they or their representatives can use with ease and confidence.

Here’s our suggestion – what we would call Data Ranches servicing perhaps several LINks where local user based data is re-mined and reformed for the purposes of the LINks. It is our data and we need to rescue it from local government and health management, the regulators and the Department of Health paymasters and use it for our own benefit in our own way.

Join us – all you have to lose are your ignorance and guilt at not knowing the facts. They are all there to be discovered and used.