Friday, June 29, 2012

There Are Some Important Lessons Here About Health Information Sharing. We Ignore Them At Our Peril.

The following excellent article on the UK NHS’s Shared Care Record (SCR) appeared recently.

In the summary time

The creation of Summary Care Records for 50m was the most high profile and contentious of the national projects set up by the National Programme for IT in the NHS. Patients were supposed to view and add to these records via the website organiser, HealthSpace. Rebecca Todd looks at the bumpy path of these data-sharing initiatives.
20 June 2012
‘Delivering 21st Century IT’ promised to build a “life-long health record service” that would give healthcare staff and patients access to “universally available, secure, accurate and up to date health records.”
The National Programme for IT in the NHS, which took forward the strategy, turned this commitment into the NHS Care Records Service.
On the one hand, it set up a national project to create a Summary Care Record – a central record of a patient’s health status that was intended to provide vital information for staff working in out-of-hours and A&E services, and for temporary residents.
On the other, it set up local service provider-led projects to deliver detailed care records systems to trusts and other healthcare organisations; with well-known results.
Targets and rows
As with the other national projects to create e-booking and e-prescription services, NPfIT set a highly ambitious target for the roll out of the SCR. Every patient in England who wanted a record was to have one by the end of 2007.
By the time the first trial - at two GP practices in Bolton – went ahead in March 2007, new guidance was saying that full roll-out should be achieved by the end of 2008. The delay arose, in part, because the programme soon ran into an outcry over confidentiality and consent.
Privacy campaigners argued that the Summary Care Record was an extension of the ‘database state’, and that patients should opt-in to the programme, instead of having to opt-out and having a record created by default if they failed to do so.
Detractors also argued that patients did not fully understand what information was being uploaded, and that they system was wide open to abuse by anybody with an NHS smartcard.
The British Medical Association was concerned that information was not being kept up to date and its General Practitioners Committee called for the roll-out to be suspended until reviews of the content and consent process had taken place.
The review of the record’s content, led by NHS medical director Sir Bruce Keogh, concluded that the core record should only contain a patient’s demographic details, medications, allergies and adverse reactions, and that these should continue to be copied from the GP’s medical record.
A separate review concluded that an opt-out form should be included in patient information packs. Following these reviews, the coalition government gave the green-light for the project to proceed.
Other ways forward
Despite the slow progress of the SCR roll-out, the drive to share relevant patient information among appropriate health professionals is stronger than ever.
This is shown by the development of local shared record schemes in a number of areas including Cumbria and Hampshire.
Dr Paul Cundy, the chairman of the BMA and RCGP's joint IT committee believes that over the next ten years, the GP record will assume the role of the single electronic record.
“Increasingly people are looking to link up to or add to or extract from the GP record and that’s because it’s so far ahead of anything else that you could develop that it’s the natural place at which to start,” he explains.
“The concept of the GP record becoming the default single electronic record for the patient - that’s fine. We have for the last 60 years acted as the collator of the patient history and that will just bolster our position as the patient guardian.”
Dr Cundy also predicts that over the next decade, there will be a social media effect on health records, starting with lots of “app like applications” and integration of personal communication devices such as mobile phones and iPads into health care.
Emailing GPs, booking appointments and checking results on line will be “taking off in a big way,” he argues.
“Ten years ago when they first told us (GPs) what they were going to do to us (as part of the NPfIT). We were initially worried, then we realised it wasn’t going to happen and it was just a matter of time - of waiting - until it fell apart. And it fell apart.”
Lots more here:
It seems to me this article has a huge number of lessons for Australian policy makers and that the saga it covers needs to be much better known than it is.
The last paragraph I find particularly telling. I wonder, a decade from now, will GPs in Australia have had a similar experience - I suspect so.
The whole of the last section seems to me to reflect where we should be going and it is pretty sad we are heading down the present blind alley.
The whole article needs a very careful read.


Anonymous said...

GPs just waiting until it falls apart - reminds me of William Butler Yeats' poem, the Second Coming (HealthConnect, PCEHR?)

Things fall apart; the centre cannot hold;
Mere anarchy is loosed upon the world,
The blood-dimmed tide is loosed, and everywhere
The ceremony of innocence is drowned;
The best lack all conviction, while the worst
Are full of passionate intensity.
And what rough beast, its hour come round at last,
Slouches towards Bethlehem to be born?"

Anonymous said...

Nice, Anonymous, if a trifle hyperbolic. I don't think you'll find most people in the street or even most medicos even know what the PCEHR is, let alone that it is upon us, so the anarchy, blood and passion etc will just pass them by. ROugh beast might not be so wide of the mark, however. Online rego is having its final test as I write, by the way.

Cris Kerr said...


On the last day before the official launch I can still hope...

(a) To ensure exactly the same meaning/understanding from all the words that will be employed and transferred within our new ehealth system, everyone needs to be utilising the same dictionary of health and medical terminology with the same succinct descriptors. Where medical terms are linked to ranges and measures, these must also be accurately detailed (this is due to their historical tendency to be reviewed and changed, eg; cholesterol and other minimum and maximum range measures and indicators).

(b) A single medication database where the chemical composition of every prescribed and over-the-counter (OTC) medication is included, along with all relevant chemical safety data, eg; toxicity, recommended minimum and maximum duration of use, contraindications, short and long term side effects, etc.

(c) Freedom of fully-informed choice. The capacity for patients to opt-in or not after they have been fully informed and are able to trust the ehealth framework has been designed and risk managed in fulfill and protect their best short and long term interests. Ensure patients also have capacity to opt-in to de-identification of their records so they can be pooled for health and medical research with the intent of improving the long term health outcomes of all Australians.

(d) Ensure health professionals are motivated to adopt the new ehealth framework through highlighting the long term benefits to their work and personal satisfaction levels; through enhanced capacity to improve clinical decisions which improve their patient's short and long term health outcomes, workflow and productivity will improve and overall personal satisfaction levels will improve. Encourage health professionals to adopt a transparent 'ongoing medical education framework' that celebrates successes and quickly and responsively learns from errors, to participate in a 'learnings framework' where the priority is 'improving/correcting in the best interest of the patient, without apportioning blame' (with the exception of repetitive incompetence or willful harm).

(e) Plan to create a transparent population/public health dataset that has strong data integrity, transparency, and includes safeguards against 'conflict of interest' creep from the outset, and plan to maintain that reliably and consistently for the long term... so you can then plan for long term meaningful secondary use, and long term reliable, trustworthy, and testable research outcomes, which will subsequently, over time, dramatically enhance the reliability and credibility of research outcomes and elevate the reputations of all the talented researchers who contribute to long term improvement in quality health outcomes for all.

(f) Plan for a research framework that can analyse and report on the quality and sustainability of short and long term health outcomes (including patient self-reported health outcomes) across all treatment approaches (comparative treatment effectiveness), and present those lists of weighted findings comprehensively to healthcare providers free of charge for the purpose of 'look ups/reflections' for ongoing medical education and as an aid in day-to-day clinical decision making.

(continued in Part 2)

Cris Kerr said...


(g) Plan to capture and quickly respond to feedback, and to monitor progress closely in the early stages, with intent to expertly and nimbly correct through proactive (thoughtfully considered and implemented within the context and guidelines of the overall mission, values and goals) permanent fixes (as opposed to quick fix, highly reactive and volatile work-arounds). Periodically measure, analyse, and celebrate success, eg; improvements in long term quality of life measures, with subsequent improvements across national productivity and public health economic sustainability. All qualitative and quantitative data captured will enhance Australia's capacity to add value, and measure the value of return on their investment in Australians' health futures.


(1) A single, central PCEHR repository for patient records within an 'appropriately designed and executed' ehealth framework (see earlier post here of 29.6.12 and previous PCEHR submissions). These records can then serve an opt-in

(2) GPs initially create and upload a single summary ehealth record (diagnoses, prescriptions, test results, surgeries, and other relevant medical history to-date).

(3) On each subsequent occasion of medical consultation, testing, or treatment at a healthcare provider organisation, a patient record will either be created or updated. Regardless of which medical software the organisation employs, the method used to update the record could be adapted to securely and privately transfer updates to the central PCEHR repository via introducing a 'comprehensive standard template' that facilitates automatic mirroring of all those parts of the organisation's clinical record that are relevant to a patient's shared medical record and quality of treatment (no increase to day-to-day workload for healthcare provider).

(4) Those sections of the healthcare provider organisation's internal clinical record that are to be automatically mirrored across to the comprehensive standard template would be highlighted, perhaps in a particular colour, so they're flagged for the person entering the data, and that person can see which information entered will be mirrored across to the comprehensive standard template.

Anonymous said...

Chris Kerr - too much info - KISS one step at a time.

Cris Kerr said...

Anon, this is a simple list of single small steps.

The problem is that these single small steps should all have been developed long ago.

Anonymous said...

How about starting your thinking with:
1. a strategy
2. to engage software developers
3. to build upon established systems
4. already working in the field

If you don't start there Chris you will end up in just another ivory tower of Babble - sorry Babel.

Cris Kerr said...

If 'established' software represents a good fit with the proposed overarching public health mission and meaningful purpose, or could be modified for same, then of course.

Strategy is not a starting point. Nothing should happen in the absence of a clearly defined overarching honourable public health mission that's in the best long term interests of all Australians.

The starting point puts everyone on the same page, before strategic and operational objectives are developed to fulfil the mission.

Following are links to a couple of my submissions (sorry, babble). I'd like to read yours. Where can I find them?

(1) Submission to Strategic Review of Health & Medical Research May 2012

(2) Feedback on Draft Concept of Operations 8 June 2011 (template addendum, resubmitted Sept 2011)$FILE/Case%20Health%20submission.doc

Grahame Grieve said...

Cris, I like your list, but these lists are the holy grail of eHealth. They are going to take decades to achieve, mainly because they require social and generational change.

in the meantime, we have to make achievable short term goals, and so I personally believe that the real goals of the pcEHR are to (1) move us a small step in the right direction, and (2) create more impetus for further movement in the right direction.

You sound as though you're in the camp of "if it ain't perfect, I don't want it at all". I prefer the current approach, for all it's shortcomings that we have to deal with.

Dr David More MB PhD FACHI said...

Grahame said:

"I prefer the current approach, for all it's shortcomings that we have to deal with."

My point is that we had better approaches available for the same money that were somehow ignored. No one has ever provided an explanation as to why and until they do I am not going to be in any way keen regarding what is going on.

I think the public deserve some explanation for what seems to be an expensive and third best approach.

I do agree we should not wait the perfect if we can have the good. I would much prefer the good to the rubbish we are currently being offered.


Grahame Grieve said...

Hi David

When I say I prefer the current approach, I generally mean, having something that's less than perfect, instead of having nothing at all.

You are well aware that I'm not in a position to discuss the detail of what has and hasn't been done here in this forum. I'm sure that in a few years time, we'll be offered perfect 20/20 hindsight of the mistakes presently being made.

Dr David More MB PhD FACHI said...

"I'm sure that in a few years time, we'll be offered perfect 20/20 hindsight of the mistakes presently being made."

Not if history is any guide. Anyone ever see any review of HealthConnect - accepting that Mediconnect was reviewed well and then not followed up.


Cris Kerr said...

Hi Grahame,

We needed to create the big picture first, then break it down into jigsaw piece size projects... always with the intent of rejoining those pieces neatly back together to re-form the big picture at some future point, in the best interest of all Australians.

My concern here is that bits and pieces are being built without intent to make sure they're the right-shaped parts that will fit neatly together at some point in the future.

Grahame Grieve said...

Cris, it'd be a pretty neat conjuring trick to build to right shape when no one knows what the right shape is. We've certainly tried to keep an eye on the future, but the imperatives of now always get in the way of that. Though it's even scarier if you proceed without the imperatives of now.

Cris Kerr said...

I'm sorry Grahame but I don't accept that no-one knew or knows the right shape this should take.

If we were to ask the Australian population what result they would expect to see for their $1B tax dollars invested in Australians' health futures, I believe a high percentage of them would express similar expectations without ever laying eyes on what was proposed within my submissions.

Australians need only be asked to consider what they think the future should look like for their children and grand children.

This was and still is a sensible, fair, and logical expectation with IMH(uncredentialled)O far more potential to raise health quality standards and outcomes (so people don't suffer unnecessarily), improve productivity and economic sustainability in this country than any other policy or program I can recall in recent years.

It's time we left the 'visions' (conjuring) at the door.

If all I have is a 'vision' of the future, then it's highly likely I have not developed clear objectives and a detailed plan for how I'm going to achieve them.

An overarching mission (as opposed to a conjured vision) succinctly identifies value-based primary objectives that I'm demonstrably and transparently committed to, and hence; the strategic plan must then identify the strategies that are going to be employed to ensure achievement of those value-based objectives (all the components needed and how the success of each will be evidenced/measured).

If the strategies and secondary objectives don't fit or won't contribute to achieving the overarching mission and primary objectives, dump them and start again.

All of this is supposed to occur prior to operational planning (developing and implementing bits and pieces).

Public/population health is a core govt role.

Achievement of the highest attainable standard of health (quality of life) is a basic human right.

And the health of the population also directly impacts (negatively or positively) the capacity of our population to be productive and contribute value to our present and future economic prosperity.

Anonymous said...

Good point Cris .... as you said .. If all I have is a 'vision' of the future, then it's highly likely I have not developed clear objectives and a detailed plan for how I'm going to achieve them.

Would you be able to layout in point form (as a starting point) the following:

A: In order of priority and logic your 10 clear objectives (each being no more than 10 words) A1 to A10.

B: In order of priority and logic 10 steps in your clear plan (each being no more than 10 words)for how you are going to achieve your 10 clear objectives. B1 to B10.

I realise that is not easy to do, it takes much time and deep thought which, by the sound of it you have already done. The benefit of doing this is it sorts the grain from the chaff and crystallizes the core issues for others to focus upon.

Cris Kerr said...

What you're asking for is a coles notes version of a strategic plan.

I'm sorry Anon, but the coles notes version of ehealth is how we got to this point in the first place.

I wrote submissions because I thought someone would actually read them... proposed mission, objectives, priorities, benefits, and comments on each page of the draft concept of operations.

I believed my submissions would be read because requesting submissions infers someone is (quite rightly) conducting a thorough scoping exercise (a due diligence process). I was wrong.

You're right, much time and deep thought, and hope prevailed... right up until June 30th.

Bad things happen when good people do nothing.

Anonymous said...

Sorry Cris - it is wrong to assume that good people are doing nothing. You may not be able to see them but that doesn't mean they aren't there and it doesn't mean they are doing nothing.

Anonymous said...

You can only describe the $91m plus $23m gouging, and now the $47m contract to maintain this charade as disappointing, regardless of how it has been justified!

The "good people" need to say something about this disappointing waste and overcharging! Lets stop it now!

When will the Minister do something about this disappointing level of waste?

When will the heads of Nehta and DOHA do something about this disappointing level of waste?

How can we spend over $150m on this when there are so many real needs and benefits that this money could go to satisfy.

Cris Kerr said...

I've seen every side of politics wave this through, and I have no doubt that's because doctors (a powerful lobby group) have not yet signed up and so aren't yet affected.

Guess who will be.

People with chronic health histories are already suffering.

Poor health, poor mental health and medications often impact upon capacity to process, comprehend and recall information.

They'll be heavily represented in the first groups that will be encouraged to register.

They should have been cautioned.

Who out there has a loud voice and has been using it honourably in the (vulnerable) public's best interest, to lobby on their behalf?

The loudest voices have been those who've missed out on some of the action, commercial/dollar wise or political/career/status wise.

Those closely involved in the process were selected because they wouldn't rock the boat.

Bad things happen when good people do nothing... until there's something in it for them.

Well, there is something in this for everyone. All our health futures.

I don't know who you are and I'm not directing this at you individually.

If anyone is kicking themself over this, it's me.

I didn't wind down other volunteer activities until late 2010, to spend more time on this.

Since then I've tried to clearly communicate potential benefits and risks in the public's best interest, but I don't have a lobbyists loud voice, was too late, and have been ineffective.