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But what information leads to the revolution?

January 5, 2010

As a follow up to yesterday’s piece noting the Conservative pledge to start an “information revolution“ to drive up quality, I fished out these rough notes for a talk I gave last month at the King’s Fund. The organisers had asked me to speak to the question, “What information do patients actually want?“

What do they not want?

They don’t want the “leftovers” from surveys or programmes designed to do something else, e.g. complicated safety data, HSMR.
They don’t want information that doesn’t let them compare
They don’t want edited stories from the hospital itself
They don’t want bland, averaged data for the whole place
They don’t want out of date stuff from last year
They don’t want meaningless surveys of 200 “invisible” patients
They don’t want adverts and spin from the hospital’s communications and PR team

What information do they want to receive?

SIMPLE: they want the same as they want when making any other decisions in their life, they want exactly the same as you. What would you want to know before choosing a hotel, a school, a lawyer, an airline?

They want to be able make an informed choice – or to be happy not to need to!
Want to know they are getting the very, very best care
Information they can understand
Information they can trust: independent, transparent, non-edited
Information that relates to them and is deeply meaningful
Information that is highly detailed about their care: recent (yesterday!), their ward, their out-patient clinic, their doctor and nurses

When and how do they want to get it?
When? Before, during and afterwards
How? Anyway that they choose!

But don’t confine this to what information patients want to receive – all healthcare professionals and organisations need to think about what information patients want to give.

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