Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Wednesday, January 16, 2019

The UK Seems To Be Moving In A Different Direction With Shared Records And Digital Health. Very Interesting I Believe.


A short while ago I heard about the Dorset Care Record from a colleague who remarked that they seemed to be setting up a small myHealthRecord for the local area – which seems to cover a population of about 700,000 souls.
The top line summary is here:

Welcome to the Dorset Care Record

Dorset Care Record (DCR) is an electronic record linking health and social care information from Dorset General Practices (doctors’ surgeries), Borough of Poole CouncilBournemouth Borough CouncilDorset County CouncilDorset County Hospital, Dorset Healthcare University NHS Foundation Trust, NHS Dorset Clinical Commissioning Group (CCG)Poole Hospital, and Royal Bournemouth and Christchurch Hospitals to improve care in Dorset.
Here is the link:
Here is how the system is described:

About the DCR

At present, health and social care organisations in Dorset may hold different sets of records about you. Information in different records may be duplicated or incomplete. The Dorset Care Record is a new confidential computer record that will, over time, include a range of health and social care shared information to help improve the care you receive.
Sharing appropriate information electronically to a single place, will offer direct access for authorised health and social care professionals to provide as full a picture as possible of your history, needs, support and service contacts. It will join records and systems together for the first time in Dorset. In the longer term, the aim is to offer you access to your record.
It is closely linked to the Dorset Information Sharing Charter (DISC), which provides Dorset partner agencies with a robust foundation for the lawful, secure and confidential sharing of personal information between themselves and other public, private or voluntary sector organisations that they work, or wish to work in partnership with. The Charter will enable all partner organisations to meet their statutory obligations and share information safely to enable integrated service provision across the county and better care outcome for its residents. Information about DISC can be found at https://www.dorsetforyou.gov.uk/disc
DISC members include GP surgeries, partners, blue light services and a range of voluntary organisations and schools. The DISC will enable all partner organisations to share information safely and provide a more integrated service for residents.
The Dorset Care Record is a key digital tool of the Dorset Integrated Care System (ICS), also known as Our Dorset, an initiative that drives sustainable transformation in health and wellbeing for Dorset residents. This service is designed to provide care closer to home, prevent ill health and reduce inequalities.

Access

By law, everyone working in, or for, the NHS and adults’ and children’s social care must respect your privacy and keep your information safe. The Dorset Care Record is held on a secure computer system. Data protection is taken very seriously. We will ensure that your record is only viewed by professionals who need to see it when providing your care.
Under the Data Protection Act (2018) and the General Data Protection Regulation, you are able to ask to see any information held about you. If you wish to see the information held about you please contact the organisation who is providing your care or the DCR Privacy Officer.

Benefits

There are a number of benefits from linking health and social care records for you. These include:
  • Co-ordinated and safer care
  • Clear decision about your care
  • No need to repeat your details to different professionals
  • Your care record is always available
  • We always have accurate contact details
  • Co-ordinated care around your needs
  • Understanding your situation better
  • Your record travels with you around the county.
The Dorset Care Record will make a big difference for health and care professionals, giving them a common, comprehensive view of your history and needs at the touch of a button. There will be no need for a series of phone calls or delays in seeking additional information. They will have a much better chance of preventing avoidable health problems, reducing hospital admissions and ensuring you receive exactly the right kind of care and support you need.
The Dorset Care Record benefits for social care include:
  • Help to improve hospital discharge planning
  • Inform support and care management in the community to help keep you independent
  • Time saved searching for information and understanding the situation when you first contact social care
  • Helping you keep well and out of hospital and understanding when you have been admitted to hospital so that home care visits can be stopped.
Other benefits include:
  • Time savings from trying to find out who is involved with you and your family
  • Ability to understand the timeline of interventions across services/organizations
  • A way to share significant events/changes in your situation with other professionals
  • Better access to information to inform decision making.

Information sharing

We are working to improve your experience of integrated health and social care. In order to achieve this, we are making care records available to health and social care staff in line with current legislation – the General Data Protection Regulation (GDPR) and Data Protection Act 2018.
The GDPR gives us lawful reasons to process your personal information, so we don’t need your consent. You can find out more about these lawful reasons by looking at the DCR Privacy Notice.  Your health and social care professional can talk to you about how your information is shared and tell you how you can opt out of the DCR if you want to.
Opting out will not affect your treatment, but the DCR will make information sharing quicker, easier and more complete, which helps to get you the right treatment at the right time, especially in an emergency situation. More details about your information rights can be found on the Information Commissioner’s Office website

Data sharing

A range of information will be shared with professionals through the Dorset Care Record:
  • Your up to date personal contact details and care needs
  • List of diagnosed conditions – so health or social care professionals have a complete record of your care
  • Medications – so everyone treating you knows what medicines you’ve been prescribed
  • Allergies – to make sure you aren’t given medicine that might give you an adverse reaction
  • Test results – to speed up your treatment and care
  • Referrals, clinic letters and discharge information – to make sure the people caring for you have all the information they need.
Under the Dorset Care Record, medical and social care professionals will be able to access the same information. They will be able to share it safely, helping make better decisions more quickly and efficiently. This will help provide you with better healthcare.

Opt out

If you do not want your health and care information to be shared, you can opt out of the Dorset Care Record. Opting out of the DCR means that your information will be hidden and not available in the DCR system even in an emergency situation unless you change your mind.
We are sharing information to improve care, but there are four ways you can opt out. You can:
  • Compete the online form
  • Print and complete the form and post it to the Privacy Officer, Dorset Care Record Partnership, County Hall, Colliton Park, Dorchester, Dorset. DT1 1XJ
  • Fill in the opt out form on our generic leaflet (Ref: DCR2/18), which can be found in public libraries, GP surgeries, hospitals and local authority buildings.
  • Call the Privacy Officer on our helpline number 0345 2000 0026
If you have previously opted out of a health and social care record, you will need to contact the appropriate provider should you wish to continue to opt out of their system.
If you have any specific concerns about your privacy you can contact the Privacy Officer on 0345 200 0026 or dcrprivacyofficer@dorsetcc.gov.uk.
Here is a technical description of the system and what it does:
Basically this is a professional use system, which from the view of the user is read-only from the most current data, and is accessible for all professionals from doctors and nurses to social care workers and ambulance staff. As yet the patient has no access but that is said to be planned.
The system is based on Orion Technology integrated by Accenture it seems (remind you of something?)
The following from medConfidential explains the current Local Health and Care Record (LHCR) initiatives,

More detail than you (probably) ever wanted to know about Local Health and Care Record systems.

The Exemplars
Five LHCR Exemplars have been chosen, covering 40% of the population of England.
While some areas will be attempting to make two or more existing (or developing) systems ‘interoperate’, in order that patients’ and service users’ data flows correctly along care pathways, it appears others may instead scrap what’s already in place / under development and commission a new system instead. While this latter approach may address (some) data flows within that area, it does not tackle what purports to be the purpose of the exemplars, which is to demonstrate functional interoperability across / between disparate systems – most acutely, across the interface with social care (an aspect which, as ever, seems very poorly represented).
Will the LHCRs be yet another round of spending on established, well-trodden shared health record technologies – in preparation for making patients’ data more readily available for a range of secondary uses – or will they instead tackle the strategic and systemic failings of (consensual, safe and transparent) information flows within and across the health and care system?

System C & Graphnet Care Alliance

Of the five Local Health and Care Record Exemplar areas, three contain at least one shared record system based on Graphnet’s CareCentric software – meaning the lowest common denominator of mass copying may predominate.
Whether it is wise to award an effective monopoly to a single supplier remains to be seen; the NHS has taken pains to avoid this is in other areas. That Graphnet’s software and just as crucially, its architectural approach – seems to be the platform underpinning the majority of the LHCREs suggests similar pains would be sensible, if only to ensure legitimate alternatives to mass data copying are properly explored.
Of course, if the political goal is to proceed at pace via ‘data ponds’ to NHS England’s Data Lake, and/or to convert these ‘Hubs’ into Data Trusts for further exploitation, then it might be sensible to come clean as soon as possible. Hiding such plans from the public is unlikely even to go as well as the care.data programme in 2013-16 (RIP).
1)  Wessex LHCRE proposes to ‘merge’ the Hampshire Health Record (HHR), that has been using Graphnet’s CareCentric software for well over a decade – and that was recently renamed the ‘Care and Health Information Exchange’ (CHIE) – and the Dorset Care Record.
The long-standing problems with HHR are well-documented, and continue despite the re-branding to CHIE. From Southern Health NHS Foundation Trust’s Board Papers, 27/3/18: “We recognise that CHIE does not yet offer clinicians an optimal view of care records nor work seamlessly with all existing clinical systems and so we will be upgrading the functionality of the system in May 2018.”
We note the CareCentric-based CHIE/HHR was adopted by the Isle of Wight in May 2018, and shall watch with close interest to see whether the mess that is HHR means it will be retendered. For now, as this PowerPoint presentation strongly suggests – cf. both “5 purposes of information sharing” slides, and the Architecture diagram on slide 13 – any new or developed system will be steeped in NHS England’s Data Lake thinking.
The Dorset Care Record signed a £7.8 million 5-year framework contract with New Zealand firm Orion Health in April 2017, part funding of which came from NHS England’s Integrated Digital Care Fund. Orion’s Rhapsody Integration Engine takes a fundamentally different approach to that of CareCentric – based on use of APIs, including FIHR, and message exchange – that could achieve interoperability without mass data copying. Media coverage relating to Rhapsody-based shared records programmes elsewhere in the country suggests close attention will be necessary (Orion’s Rhapsody platform was recently sold to private equity firm Hg Capital.)
Wessex LHCRE (as does TVS) falls under South, Central & West CSU, which – along with a number of its local CCGs – has suffered persistent Information Governance problems, documented in an extensive list of related NHS Digital Data Sharing Audits, that have included multiple breaches of agreement with NHS Digital, and not being able to determine who is a data processor and who the data controller in joint projects!
Until such basic principles have been properly established, it would seem extremely unwise to begin using (pre-GDPR definition “anonymised”) patients’ data for, say, Commissioning purposes
– as per the second bullet point in the Editor’s Notes of NHS England’s announcement of the Wessex LHCRE. Mixing secondary uses with direct care was the root cause of Manchester’s DataWell’s collapse; there is no reason to expect the same will not occur elsewhere if other secondary uses are introduced by fiat.
2)  Thames Valley and Surrey LHCRE combines a number of systems or programmes at varying stages of development, including Milton Keynes University Hospital’s Health Information Exchange, Oxfordshire’s Cerner Toolkit-based Digital Population Health Plan, and Buckinghamshire’s My Care Record - which, though incredibly poorly communicated (e.g. the patient FAQ is buried on the CCG’s website), is at this stage using Graphnet’s CareFlow Connect service for viewing patients’ GP records, as well as CareCentric for other purposes.
Berkshire’s ‘Share Your Care’ programme, that went live in January 2018, is delivered using a computer system called Connected Care, also built on Graphnet’s CareCentric software. The development of Connected Care was led by South, Central & West CSU, which has been shown to have serious Information Governance problems over a number of years.
For example, as detailed in data sharing audits by NHS Digital in November 2016, then August 2017 and a follow-up in November 2017, investigations of SCWCSU and related CCGs uncovered that not only did it process individual-level patient data outside the EEA for nearly two years – a “major breach” (para 2, p2) of its Data Sharing Contract with NHS Digital – but that it continued to do so for almost a year after it had been informed this was happening.
In addition to the breach itself, the CSU had performed no risk assessment of this (item 1, p4); data provided by NHS Digital did not even appear in its information asset register (final para, p6); it did not formally record the intended purpose of data use, or the structure, definition and means of data collection (item 4, p4); and agreements between the CSU and CCGs were not even clear who was the data controller and who was the data processor (item 3, p7)!
The Surrey Care Record, scheduled to be launched on 29 August 2018, is based on Patients Know Bests software. According to South, Central and West CSU’s Surrey Heartlands plan, both the “Roadmap” (see slide 6) and “Architectural approach” (slide 5) for Surrey show an intended “Enterprise Data Warehouse” design, with access for purposes beyond direct care by “Decision Support” as well as “Data Analysts/Scientists” clearly indicated. It is unclear how these secondary uses will satisfy PKB’s public promises about control and transparency for patients on how their records are accessed. This may not follow the best practices we have laid out, and which some suppliers have emphasised elsewhere.
With some of these systems so recently launched, or yet to be launched, it is difficult to tell how well they will all interoperate in practice. The overall intended LHCR approach, however, is quite clearly to copy all data to a CareCentric-provided “Analytics Repository” (see Connected Care Vision, slide 7) from where it may be made available for purposes beyond direct care. It remains to be seen how claims on this slide – that such detail-rich, individual-level linked data can be “anonymised”, and that “explicit consent” will be sought for all uses “outside direct care” – will be delivered in practice.
(This LHCRE may also be of particular political interest, as it is the one that covers Theresa May’s as well as other senior Ministers’ constituencies...)
3)  Greater Manchester LHCRE would appear to be based on some sort of combination of CareCentric and DataWell – though the Information Governance review of the latter in 2017 appears to have been so bad, the programme and public links to it have almost entirely disappeared. (DataWell previously existed in the Connected Health Citiesworkstream of the Health e-Research Centre at the University of Manchester, which is also the parent entity of the relevant AHSN.)
Somewhat oddly, given this 2017 statement, that also identifies DataWell’s original technology partners: “The exchange has been built by AHSN on a software platform from US company LumiraDx and working with IBM and EY (formerly Ernst & Young). “There is no central data warehouse,” Thew said. “DataWell is an information exchange and data moves at the point of need.” - UKA Health and Care, 12/7/17
DataWell was however, just 10 months later, being referred to as some sort of ‘data cleansing tool’: “Parts of Greater Manchester already use a system called CareCentric by Graphnet, which the remaining areas will also be adopting. CareCentric works by connecting different systems and sharing information between them. An existing tool called DataWell will also be used to cleanse the data, removing duplication and errors.” - University of Manchester, 24/5/18
DataWell was predicated on the mixing of direct care delivery with secondary use (research), an approach that was/is unsupportable in what must first and foremost be a shared care record. From a technical perspective – given mixing was a choice, not a necessity – this may prove to have been unfortunate; according to public statements such as the UKA Health & Care one above, DataWell used APIs and ‘just in time’ information, as opposed to CareCentric’s mass data copying approach.

Roll your own’ / other suppliers

4)  The One London LHCRE has merged (as of 5/3/18) the Local Care Record in Bromley, Lambeth and Southwark with a system called Connect Care in Bexley, Greenwich and Lewisham. We are aware there are a number of LHCR “demonstrators” across London, but confine our comments to information that is actually public at this point.
While almost no information appears to be publicly available on the technical side of Connect Care, or its governance, the ‘Skunkworks’ of the Academic Health Sciences Centre, King’s Health Partners, that is behind the Local Care Record – an organisation now known as KHP Online – has given an outline of the LCR’s development path from the initial linking of three hospital Trusts (from CSC’s old iSoft software to Advanced Health and Care’s CareNotes) through to integration with GP systems (primarily EMIS Web, but also other providers through Healthcare Gateway’s MIG).
KHP Online appear to be taking an API-based, not data copying, approach – incrementally adding in systems and services, while maintaining its primary focus on the information necessary for the provision of care.
Lacking any further detail on Connect Care, it is not possible to determine the approach it takes – nor which approach to shared care records will be adopted across South London. It is to be hoped the transparency of what One London is doing will significantly improve as the Exemplar proceeds. It may be that a fresh digital approach, fully focussed on user needs, can deliver a modern consensual, safe, and transparent model that others, most notably Graphnet, have entirely failed to deliver. It could also go very badly wrong.
5)  Yorkshire and Humber LHCRE already includes the Leeds Care Record and Rotherham Health Record. The Yorkshire & Humber Academic Health Science Network (AHSN) took the opportunity of the awarding of LHCRE status in June 2018 to announce a new collaborative, the ‘Yorkshire & Humber Digital Care Board’, that “will result in the creation of a new Yorkshire & Humber Care Record”.
This may or may not conflict with ongoing plans for the Leeds Care Record – based on Leeds Teaching Hospitals NHS Trust’s in-house electronic health record, called PPM+ – which was approved for a further 3 years development in January 2018. The Leeds Care Record has previously worked with suppliers including Healthcare Gateway (for MIG), InterSystems HealthShare (for its Master Patient Index) and PI CareTrak (for social care).
Meanwhile, Rotherham’s Electronic Patient Record (EPR) infrastructure was, once again, “overhauled” in April 2018. Rotherham NHS Foundation Trust has stuck with Meditech EPR / Healthcare Information System (HCIS) for many years – backed up by BridgeHead Software, partnering with Dell, for “data and storage management” – despite serious issues that required the intervention of Monitor in 2013, and several subsequent updates.
A December 2017 paper detailing Rotherham Health Record’s Privacy Impact Assessment and Information Sharing Agreement suggests (p8 of 43-page PDF): “The RHR portal receives data only from existing Systems and does not retain any clinical patient information locally within theportal”, which, while appearing consistent with the data flows indicated on p11, does not address exactly what the RHR portal is and how it operates – or whether data is being copied elsewhere.
We note the ISA does makes it clear (section 4.3, p27) that, for the RHR, “‘Direct care’ does not include research, teaching, financial audit, service management activities or risk stratification.” Will secondary users instead simply ‘route around’ the portal and access the BridgeHead/Dell data store directly? Much more clarity is required.

Summary

For each of these systems, the devil is in the detail. We have previously outline the principles behind such systems.
As with all care systems, it is not just what they do today, but what NHS England wishes them to do tomorrow. Once GP data has been copied into these systems, it is under the control of NHS England and available for purposes beyond direct care. This loophole needs to be closed by a clear guarantee to each patient when introducing such systems, and as part of any future NHS legislation for ACOs (ICPs) that loophole removed.
medConfidential
August 2018
Here is the link:
So what we have overall is a lot of interesting activity using all sorts of approaches on a small scale to discover what can work and be useful.
Fascinating that while the Dorset record is opt-out there are 5 consent levels. Totally out, totally in, time limited consent and access limited consent – see tech .pdf for details. It is worth browsing to see how all this is being done. It looks the same initially but really is different in some very sensible ways.
What do people think?
David.

9 comments:

Bernard Robertson-Dunn said...

David,

IMHO, the most important aspects of that story are:

1. The patient will have no control over anything in the record. They can view it, that's all.

2. It is not a secondary, summary record.

3. The data is held only by healthcare organisations, not the government.

4. Consent is explicit and graded.

i.e. the opposite of the characteristics of the myhr that mean it is useless.

Anonymous said...

Bernard I think if you peel back the layer of plaster you will find care.data with sheep's clothing. In the UK you work for the NHS, the data is seen by NHS to be theirs and to do what they want with it. This is a glimpse of what is to come simply because the public service has slowly been dumbed down and silenced.

https://www.itpro.co.uk/data-protection/32720/handing-nhs-data-over-to-google-really-isn-t-a-healthy-move

Of coarse there is always "if it looks like a conspiracy, then its probably a complete stuff-up"

Dr Ian Colclough said...

Very interesting overview and commentary David which seems to reflect the 'state of the art' of Digital Health approaches in the UK to the 'development' of multiple versions of a Shared Electronic Health Record.

As I read this lengthy overview I wondered how much analysis and planning lay behind each of these so called 'Exemplar' projects or whether they had been established, as is so often the case, more on the wishful thinking and hype fuelled by exciting rhetoric and promises spewing forth from various vendors well-resourced sales and marketing departments.

Notwithstanding all that, Bernard's observations are most pertinent.

Anonymous said...

Nice post David. I suspect these recast pathfinding projects are as 9:53 so politely put. Many viewpoints make a good story - https://www.opendemocracy.net/ournhs/george-gosling/nhs-long-term-plan-health-centres-and-dog-that-didn-t-bark?utm_source=Weekly+Newsletter&utm_campaign=f6a015531a-WEEKLY_NEWSLETTER_MAILCHIMP&utm_medium=email&utm_term=0_6e23da4aab-f6a015531a-408119749

Bernard Robertson-Dunn said...


@Anon, January 16, 2019 11:57 PM

"Bringing together prevention and cure, health and social care, is hardly a new – or strange – idea. So why hasn’t it happened?"

Maybe it hasn't happened in Australia because it is a new idea down here.

IMHO, myhr has more in common with deckchairs and the Titanic than the transformation of health care.

On a more serious note, the real reason why prevention and cure, health and social care have not been brought together is because in government (and other areas) the natural approach to addressing complex problems is to partition and simplify them.

The government divides things up and puts them into portfolios, healthcare divides medicine into specialties, the ADHA looks at healthcare through the eyes of document management systems.

Unfortunately partitioning and simplification hides many aspects of the problem, medication interactions being a classic example. And just knowing that a patient is on multiple medications won't help a lot because (and this may come as a surprise to some) everyone is unique. One-size does not fit all. In fact, one-size fits nobody - Read The End of Average by Todd Rose.

Nobody is looking at clinical medicine through the eyes of the unique patient.

That's the real goal of the transformation of medicine - treating the patient as a unique individual, not as a member of a cohort.

Trevor3130 said...

Insiders toying with the idea of whistle-blowing on bad practices could benefit from Here are 12 principles journalists should follow to make sure they’re protecting their sources. Some may recognise one of the names contributing to the Perugia Principles.

Anonymous said...

And if someone wanted to pass something to a reporter what would be an address?

Trevor3130 said...

Anon January 17, 2019 8:19 PM -

Try https://securedrop.theguardian.com/ for a start.

Trevor3130 said...

Avenues for collecting facts, then packaging them for public (voters) consumption are evolving. A post from Health Care Renewal refers to the diminishing power of blogs as more turn to social media for information. Mainstream publishing is changing too, so those interested in putting the facts of healthcare IT before the public need to understand journalism and how journalists may be attracted to (and repelled from) the "data". Can the podcast format be used to promote good Healthcare IT?