From A to B on using medical records to help people get better

If the day has a ‘y’ in it then I guarantee that policy-makers and experts somewhere across Whitehall and Westminster are meeting to plot a way through the stalemate otherwise known as the ‘use of health data.’  That is: how we are going to use my and everyone else’s medical records to make people better now and in the future?

This afternoon, sitting in my third meeting on the subject in as many days (yes, I know, I lead an exciting life don’t I?), I did wonder – and not for the first time – if I was about to disappear down a very deep hole; there are so many organisations, working groups, initiatives, Boards, committees, panels, all working on the issue. I might just make one up for the hell of it.

Talking of which, if we had placed moles at High Barnet, Morden, Lewisham and Upminster and asked them to create the London tube, the resulting mess wouldn’t be far off where we are now.  A maze of tunnels that mean something to the owner but no one else.  A complex system that you would only know was there because of the small mounds of earth on otherwise pristine lawns.  Everyone is trying to do something and with the best of intentions.  But the overall purpose of this activity remains frustratingly nebulous.  We can’t even agree how to express why we want to do it.

Maybe the task ahead on data is essentially an engineering feat akin to Crossrail.  We need to know the starting point, the end point and then have a bloody large tunnelling machine to hand.  We might cause a few edifices to lean.  Some egos might vanish down the odd sink hole or two.  A few people will miss out completely on a connection to the finished product.  But if we want to get from A to B, that’s the price we will have to pay.  Some will no doubt say that the National Information Board meeting last week is the start of this.  I hope so.

There are rumours Government is ruminating on a new health challenge for its next five years in office.  Like dementia in the last parliament.  I’ve heard obesity, diabetes and mental health all being mentioned as possibilities.  Which probably means it’s all just a pointless rumour.  But, if not……I hope that the Prime Minister picks none of these.  I’d rather he went for something like ‘health data’ which would benefit all of us.  It probably needs that sort of ‘oomph’ and clarity of purpose.  Critically, it probably needs this sort of leadership to help us get to the other side.

And what of the public?  Well, you’ll note they are conspicuously absent from my opening line.  Need I say more. In the meantime we have all become amateur experts on the subject of public confidence and trust.

It might be heresy to say it but I suspect we know as much as we need to about public attitudes.  We certainly don’t need any more surveys or polls or focus groups.  We also knows what works in public engagement.  Not just in general but on the specific issue of data use as well.  We just need to get out there and talk it through with people in terms they can connect with.  The same with our GPs and other health professionals. Because it will take time to build a compact on this issue.  And it will be too late if we don’t start soon.

So, there you go, a blog with no real ‘A’ nor ‘B’.  But this is just a blog.  Not about helping people to get better.

How a Dame and the Great British Public might bring an end to the patient data pantomime…

The Health Service Journal (HSJ) has an ‘exclusive’ interview today with Dame Fiona Caldicott.  Dame Fiona has been chairing a review – of information governance in health and social care – ‘Caldicott2.’  Its report and recommendations are due out in just a few short weeks.

You have to subscribe to HSJ to read the full interview but you can find the accompanying news report here.  It would seem Dame Fiona and her review team will be making a case for a duty to be placed on health and social care organisations to share information where it is in the patient’s interest.   This would become an additional principle to sit alongside the six that already exist following the first Caldicott review in 1997. How very sensible.  

Sounds like the review will be equally sensible when it comes to its recommendations on the the handling of patient data for research purposes.  Thank goodness.  

The pantomime about the use of patient data for research has been allowed to go on for too long.  The policy wonks and the odd lawyer have selfishly hogged the stage in their horse costume.  Meanwhile, the Big Brother doomsayers have hovered in the background with an intermittently tuneful chorus of pro-research voices standing in the wings, imploring us to hand over our data.  As both sides have exchanged the traditional chants of ‘Oh yes you will’ and ‘Oh no you won’t’ few among their number have noticed or cared about the lack of audience participation.

How appropriate therefore that a combination of a ‘Dame of the British Realm’ and the Great British Public should bring us all to our senses.  For, let’s not forget, this review actually went out and talked to citizens and patients.

A few years ago when we were developing the patient leaflet ‘Your health records save lives’ , we initially got together a group of experts.  Cue a hideous stalemate of opposing and frankly irrelevant views (from a patient perspective , anyway) based on people’s interpretation of policy and law.  So what did we do?  We took the debate outside the room and asked patients and GPs what they felt, what they wanted to know, and how best to present this.  The leaflet (link above) is the result of that.  Shame that, despite its success out there, we can’t seem to find someone to fund its further production and distribution.

With that…and no other comment…I shall leave you with this story today about the Department of Health commissioned report by the Royal College of General Practitioners (RCGP) on GP practices providing online access to medical records.

The patient?  S/he’s behind you…..

 

 

 

 

‘Caldicott 2′ Evidence gathering session on research – ‘patients and the public’ questions

‘Caldicott 2′ is the health and social care information governance review being conducted by Dame Fiona Caldicott with a due date for completion this autumn.  The title of the review is ‘Information: to share or not to share?’

I passed by the official website today and noticed that it now has a huge amount of information on there about the review panel membership, process and forthcoming evidence sessions.

Of particular note is the fact that the panel is holding an evidence-gathering session on research on  10th July and have invited submissions on the theme.  The above link will take you to the specific page about the research theme including a comprehensive document outlining the questions on which they are seeking views. This includes a ‘section 6′ which focuses on Patients and the Public and I thought it might be helpful to cut-and-paste these particular questions below:

Patients and the Public

a. What information should patients and the public be given about how their information is used and to whom it may be disclosed? How can we ensure patients and the public are better informed about research and how their information may be used for research?

b. How can patients’ and the public’s views and wishes in relation to the use of personal and confidential data be accommodated? To what extent should patients be able to exercise control over anonymised and pseudonymised data?

c. To what extent should minority views be accommodated within systems?

d. What and how should consent and the withholding or withdrawal of consent be recorded?

e. How granular do you think the consent recording requirements need to be?

f. The UK Life Sciences Strategy has proposed that the NHS Constitution commitments are amended to reflect the presumption that:

  • data collected as part of NHS care can be used for approved research, with appropriate protection for patient confidentiality; and
  • that patients are content to be approached about research studies for which they may be eligible, to enable them to decide whether they want a discussion about consenting to be involved.

Patients will retain the right to opt out but it will remove the current requirement for consent for the disclosure of confidential patient information to researchers.

What are your views of these proposed changes to the NHS Constitution? Do you have suggestions for how this might be implemented? Do you have concerns about the ways it might be implemented?

However, I encourage you to look at the full range of questions because many of the others are of relevance.

Details of where to send evidence too can be found here.

NHS Future Forum talks sense on patients and medical records: i.e. we need a plan!

Much will be written about the NHS Future Forum’s report out today.  And a lot of it will be preoccupied with its recommendation that health professionals should proactively give patients all-round health advice.

Personally, I think it a good idea although you’d have thought the Forum has advocated ‘in your face healthcare’ judging by some of the reactions.

The Forum’s report covers a wide agenda.  So, just to highlight the Forum’s recommendations on information which seem very grounded and sensible and which read as follows:

Information

  • Patients should have access to their online GP-held records by the end of this Parliament.
  • The NHS must move to using its IT systems to share data about individual patients and service users electronically in the interests of high quality care.
  • The Government should set a clear deadline within the current Parliament by which all information about clinical outcomes is put in the public domain.

The Government’s 2015 deadline for giving patients online access to their medical records is an exciting if not liberating one.  But it is to the credit of the Forum that they have challenged the Government to come up with a proper project plan to make that happen.

Back later….