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Open Digital Platform Challenge Fund

Many  will be aware of the proposal that Tony Shannon and I have been promoting to persuade the decking to allocate 1% of the money they plan to spend on an “Open Digital  Platform Challenge Fund” to stimulate the development of an open digital ecosystem based on open standards.

We have had a positive response so far and will shortly be presenting out plans to the NHS CIO and CCIO. We want to be able tell them that there are enough people and projects committed to an Open Digital Ecosystems to make good use of the money we are asking for and give then a good idea of the projects that might come forward if they take up our suggestion.

To this end we have been asking people for expressions of interest via this link . We are looking for expressions of interests from people who support the approach and the specific standards laid out in our document. In not onerous to fill in the form which does not imply a fixed commitment just a general indication of interest.

If you have not already done so I’d urge you to let us have your ideas

Full details below

 

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1) Executive Summary

An NHS open digital platform challenge fund will stimulate the development of an open platform in the NHS. Open digital platforms are independently forecast by McKinsey and Co to reduce the delivery of care costs across the NHS by 11%. They will support widescale entry and growth of suppliers into the market, injecting innovation at all levels of service delivery to support improved care outcomes for our patients.

In the context of an NHS struggling through a perpetual winter, open digital platforms present a realisable opportunity to massively stimulate new ways of working, process innovation and a new digital health and care market, based around services. This is independently forecast by McKinsey and Co who predict a positive financial impact in excess of 11% across the whole of health and social care.

By creating an open digital platform and a move towards a services market, the NHS opens up the market to innovative commercial and social enterprises who presently have great difficulty breaching the significant barriers to entry. At the same time it creates an environment where health and care professionals can readily create, contribute and share new digital tools to support transformational new models of care, radically improving the care outcomes of our patients and building a sustainable care ecosystem that is fit for the future.

There is little disagreement that platforms represent the future for digital health. Rather the present debate is about who should own them, and how and when they will emerge. The “status quo” retains the closed platform frameworks, introducing open interfaces for exchange of information. This provides a short term stimulus, supporting improvements in patient care and operational efficiencies. However in the longer term, by seeking to control the rules of engagement and restricting the mobility of data, the retention of closed platform frameworks will stifle competition, impede innovation, and continue to drive-up costs.

Open digital platforms are a radical alternative that overcome the serious shortcomings of closed platforms.
They present the most assured approach to achieve consistent, long term and affordable growth in innovation-led service transformation across the complexities of health and social care. They will enable the full competitive aspects of market supply to be exploited, with associated benefits of the injection of innovations on a massive scale. For this reason, open digital platforms are manifestly in the interest of both the NHS and its patients.

The purpose of the proposed Open Digital Platform Challenge Fund is to stimulate the development of an open platform ecosystem through kick-starting the creation of open platforms, building on work already well underway, and the development of exemplar applications to exploit them.

We propose that the fund is created through diverting 1% of the investment each year in NHS digitisation into the challenge fund. This fund would be made available via an annual open competition in the form of relatively small awards to innovative organisations (public, private and third sector). The selection of projects will be balanced to stimulate and develop an open ecosystem of shareable and reusable applications to service across health and social care. We are inviting submissions of expressions of interest into this Open Platform Fund. In so doing, we will gauge the wider interest in this Open Platform fund proposal to then quickly bring these related responses to the attention of both NHS Digital and NHS England by the end of February 2017 and seek the related funding.

2) Current Situation

To introduce this bid for funding we need to review the current situation with important context on the bigger picture issues that are at play. We need to acknowledge and understand the current mediocre state of health IT, as an immature and problematic market with mixed/relatively poor value for money and results seen from billions of £ and $ of investment from the UK to the US and elsewhere.

We also need to recognise the related digitisation of the NHS has been over promised and under delivered for some considerable time. Compounding this people/process/technology problem is the ongoing and perpetual winter faced by the frontline in the NHS that is in the news.

We restate the need to continue the critical push towards more personalised, integrated care at home and in the community to meet the 2020 vision. This clearly requires an underpinning patient centred infrastructure to do so. Last February Jeremy Hunt announced £4.2 billion for NHS Health IT. In the last 18-24 months while there have been plans in the form of Integration Pioneers, Vanguards, Local Digital Roadmaps (LDRs), Sustainability Transformation Plans (STPs), there has been little/no allocated funding to date to make these happen.

In Autumn 2016 we were able to read and digest the latest review of the NHS IT, authored by US physician Dr Bob Wachter. Dr Wachter built his reputation as establishing the hospitalist as a medical specialty in the US. In recent years he has become a fearless and honest critic of the state of Healthcare IT in the US, with his book “Digital Doctor : Hope, Hype & Harm at the Dawn of Medicines Computer Age” (2015) exposing the real mediocre state of the health IT market in the US. The book and related opinion pieces on the state of health IT industry he explains some of the real problems with the current supplier market is clear. In a New York Times Op Ed piece on “Why Health Care Tech Is Still So Bad” (2015) he highlights that

“In today’s digital era, a modern hospital deemed the absence of an electronic medical record system to be a premier selling point…That hospital is not alone. A 2013 RAND survey of physicians found mixed reactions to electronic health record systems, including widespread dissatisfaction. Many respondents cited poor usability, time-consuming data entry, needless alerts and poor work flows”.

However in the NHS, Dr Wachter’s recent review led to funding being provided to “digital exemplars” all of which are a small group of hospital trusts in the NHS who will invest in those very same health IT monoliths. While understandable as a means to “do something”, rather than nothing, given the state of affairs is understood, it is sadly limited in its thinking and perpetuates the usual tactics that we have seen in the NHS IT for years, i.e. investing in the same 20th Century monoliths of old. We know that doing the same thing over and over and expecting different results is futile.

Simply put, if a small elite are getting the focus of funding for investments in 20th Century health IT monoliths over the next years then inequity within the system will increase, while original ideas in the sector to bring care into the modern era will decrease.

We have been left asking where has the requirement for integrated person centred care gone, that is ingrained in the other plans that NHS and local authorities have been working towards with STPs and LDRs etc.

What is sorely missing is the open patient centric platform that Dr Wachter looks forward to and that healthcare awaits. As this is a glaring omission, our paper recommends a focussed investment towards that end as part of a bimodal strategy for NHS IT at this challenging time.

3) What can be done

The changes required are radical, if we are to simply survive, yet alone thrive in the years ahead. We know we need a mix of people + process + technology changes. We know too that the leaders of the NHS understand and value the role of innovation and the crucial role of information technology in achieving same.

3.1) The role of an open platform

For some time now leading thinkers on both sides of the Atlantic, in the NHS and indeed the US has been calling for a move towards a more open platform approach. From within the US market, the establishment of Healthcare Services Platform Consortium aims to address the mediocrity of the “big 6” monoliths and the concurrent problem of the thousands of small unrelated vendors.

“EHRs are becoming commodity platforms. The winner will be the EHR vendor that provides the best platform for innovation – the most open and most extensible platform.”

In this we wholeheartedly agree and concur with our US colleagues.

We believe there is now a compelling case for a small but useful investment in Health IT from the bottom up, to the princely sum of 1% of the planned £4 Billion NHS IT expenditure, aimed deliberately at the integrated, patient centred care vision of Personalised Care 2020, based on the principle that all projects should aim to leverage elements of a common open platform.

4) 1% Case for an open platform

We are making a case for an investment of just 1% of available NHS IT funds to offer a way forward to improve the care of 99% of the population. To do so we have highlighted Dr Watchers analysis and writings to focus on the key problems and issues we seek to address;

Usability

“This principle of user-centered design is part of aviation’s DNA, yet has been woefully lacking in health care software design.

Interoperability

“[There are] Political obstacles to overcome, put in place mostly by vendors and healthcare systems that remain reluctant to share.”

Vision for patient centred care

“In essence, there will no longer be an EHR in the traditional sense, an institution-centric record whose patient portal is a small tip of the hat to patient-centeredness. Rather, there will be one digital patient-centered health record that combines clinician-generated notes and data with patient-generated information and preferences. Its locus of control will be, unambiguously, with the patient.”

So in order to address these real issues and support the national ambitions – usability, interoperability and patient centred care we will use the investment fund available to benefit the broader public. We wish to draw attention to that part of the population who could be better served by the NHS with an improved patient centric platform today. We are also mindful of the need to support;

  • Prevention, Self care and management
  • GP patients
  • Community Care Patients
  • Mental Health Patients
  • Social Care

We look to the leadership provided by the Gov UK Digital Service standard to highlight the principles to underpin the approach we commend.

Pursue User Centred Design & Agile Development

Leverage Open Source & Open Standards

In our work to date (on the Ripple programme and Code4Health platform based on openEHR) we have deliberately pursued these principles to useful effect and recommend them to others who wish to transform healthcare with information technology. We welcome wider scrutiny of our open platform work to date. Our work and the leading work of others (such as the Endeavour Foundation and the INTEROPen CareConnect API Collaborative) in this field, leads us to believe there is now a real, significant appetite for wider and deeper moves towards an open digital platform in the NHS.

By creating an open digital platform ecosystem, the NHS opens up the market to innovative commercial and social enterprises who presently have great difficulty breaching the significant barriers to entry. At the same time it creates an environment where health and care professionals can readily create, contribute and share new digital tools to support innovative new models of care.

We firmly believe that a small but focussed 1% investment can deliver against some of the key challenges in Personalised Health and Care 2020 on an open service oriented platform- to stimulate the public & private sector. An open healthcare platform fit for the 21st Century.

 

5) What is an Open Platform?

Platform based architectures power the internet, with the platform providing the plumbing (the infrastructure, data and services) that applications need, freeing the application developer to focus their efforts on their application without the need to build the infrastructure it needs to operate. Platform approaches speed development, make applications more robust and interoperable and open up a new services market in healthcare IT, where suppliers compete on services and the value they add rather than on the proprietary nature of their software.

An Open Platform is based on freely available open standards, so that anyone can play. As no one party can control the platform – they must collaborate – just like the Internet.

An Open Platform has the following characteristics:

  • Open Standards Based – The implementation should be based on wholly open standards. Any willing party should be able to use these standards without charge to build an independent, compliant instance of the complete platform;
  • Share Common Information Models – There should be a set of common information models in use by all instances of the open platform, independent of any given technical implementation;
  • Support Application Portability – Applications written to run on one platform implementation should be able to run with either trivial or no change on another, independently developed;
  • Federatable – It should be possible to connect any implementation of the open platform to all others independently developed, in a federated structure to allow the sharing of appropriate information and workflows between them;
  • Vendor and Technology Neutral – The standards should not depend on particular technologies or require components from particular vendors. Anyone building an implementation of the open platform may elect to use any available technology and may choose to include or exclude proprietary components;
  • Support Open Data – Data should be exposed as needed (subject to good information governance practice) in an open, shareable, computable format in near to real-time. Implementors may choose to use this format natively in their persistence (storage) layer of the open platform itself or meet this requirement by using mappings and transformations from some other open or proprietary format;
  • Provision of Open APIs – The full specification of the APIs (the means by which applications connected to the platform a should be freely available.

The key to an open platform is the definition of a set of standard interfaces (APIs) to the range of services that might be provided on a platform defined by an open process that all interested parties can participate in (like Internet standards) and that are freely available for all to use.

While it may be encouraged, not all elements in an open platform need to be open sourced. We believe that “infrastructural” components that are generic, reusable and utility like (e.g see Appendix 1 below) should be open sourced, while the overlying applications do not necessarily need to be open sourced, as long as they leverage open data models and offer open APIs.

6) Why an open digital platform?

We have seen across all sectors how platforms are changing the way people lead their everyday lives, from how we communicate and interact, how we travel and where we stay, how we manage our finances to how we shop, to name but a few. Platforms transform. An open digital platform supports:

  • Unconstrained innovation – ideas and ambitions can be shared by people across the office, street or globe
  • Collaboration – clinicians and care professionals inherently want want to share their good work with the rest of the medical world.
  • Alignment to medical science progression, been based on the spread of ideas – health IT can do the same.
  • “Publish or perish” culture of modern medicine demands that healthcare advances are laid open for scrutiny by our peers
  • Grassroots progress – Complex adaptive systems require decentralized control so people can locally innovate. Amendments and improvement can come from the grassroots and bottom up, without the bureaucracy that innovators often face.
  • A shift in the market towards a healthy, commercially sustainable, services oriented marketplace.

7) Open Platform Fund mechanism

The main aim of this Open Platform bid is;

Support the development of services towards Personalised Care 2020 –

support the development of an NHS ecosystem around an open digital platform

To be clear, while we do not currently have any secured funding for an open platform fund, our aim is to gauge interest in this approach and make the evidence based case to NHS Digital.

The fund is intended to support innovative projects that stimulate the creation of an open digital ecosystem and as such aims to support a large number of small projects that are unlikely to be supported as part of “business as usual” investment by health and care organisations. The aims are to driving innovation and transformation that is scalable, shared, flexible and adaptable and ultimately improve health IT for clinicians and improve care outcomes for patients. Winners will show that they will concentrate their efforts on usability, interoperability, patient centred care that meet the vision. To do so we suggest;

7.1) Request for Expressions of Interest

We initially invite the submission of expressions of interest into this Open Platform Fund. In so doing, we wish to gauge the wider interest in this Open Platform fund proposal to then quickly bring these related responses to the attention of both NHS Digital and NHS England by the end of February 2017 and seek the related funding .

Please submit a brief expression of interest (1-3 page) via this Google forms link; https://goo.gl/forms/4SaNvAgkAe2AfLZ82 by Friday 10th February 2017.


We will acknowledge expressions of interest, collate and feedback the results of our findings, pass on related submissions and summary findings to the Apperta Foundation CIC which we believe is ideally placed to independently oversee this process and support the case for funding from NHS Digital and NHS England. The Apperta Foundation is a not-for-profit community interest company supported by NHS England and NHS Digital led by clinicians to promote open systems and standards for digital health and social care.

While the focus of this paper relates to the NHS in England, we know that colleagues in the health systems of Scotland, Wales, Northern Ireland and indeed the Republic of Ireland are facing the same challenges at the frontline, while aware of the same opportunity on offer from an open platform from a 1% investment, particularly if done openly and collaboratively. Therefore we invite related submissions towards an open platform fund on an All Islands basis – which we also will pass onto the Apperta Foundation and the UK and Ireland CCIO Networks.

7.2) Outline of Proposed Allocation

A) Infrastructural component projects

45% of £40m = £18m over 3 years (until 2020)
Open source tooling & infrastructure components – underpinning standards and compliant components that provides services useful in an open ecosystem (See Appendix 1 examples)

B) Personalised Care: Innovation Incubation and Exemplar Implementations

50% of £40m = £20m over 3 years (until 2020)

Open APIs & open data models based projects as showcases of an open platform in action. (e.g. may include open APIs (e.g. INTEROPen CareConnect FHIR based APIs) + open data models +/- open source data repository (e.g. openEHR based). Examples may include Person Held Records/Electronic Patient Record/Integrated Digital Care Record etc. related projects.

C) Oversight/Custodian of process by an independent CIC such as the Apperta Foundation

Along with the CCIO Network and INTEROPen Collaborative to oversee clinical merit and technical connectathons.

5% of £40m = £2m over 3 years (until 2020)

7.3) Eligibility

We suggest that this open platform fund is open to:

  • UK Registered for-profit commercial entities (Companies and LLPs) and
  • UK Registered not-for-profit entities (CICs,Trusts,Companies limited by guarantee and other recognised forms) meeting UK definition of an SME (In the UK a company is defined as being an SME if it meets two out of three criteria: it has a turnover of less than £25m, it has fewer than 250 employees, it has gross assets of less than £12.5m)
  • UK Public Sector bodies (NHS Bodies, Government agencies and local authorities etc.) irrespective of size.

7.4) Match funding obligations

We suggest that applicants will be required to match fund any award from the fund as follows

  • Social or commercial micro-enterprises 1
    No match funding obligation
  • Social or commercial SMEs 2
    Match funding equal to 50% of the award
  • Public sector bodiesMatch funding equal to 100% of the award

 

1 A business with less than 10 employees and (a turnover < £2 million euro or a balance sheet total of less than £2 million euro)
2 A business with less than 250 employees and (a turnover < £50 million euro or a balance sheet total of less than £43 million euro)
These are the current official definitions applying in the UK

8) Criteria

We suggest that an Open Platform fund is open to projects that stimulate and support both the creation and adoption of an open digital ecosystem which meet the definition in section 5 of What is an Open Platform.

While the main aim of all projects will be to improve NHS services towards personalised health and care 2020, the criteria by which the funding from this fund will be allocated will depend on the concurrent creation of value add in the form of;

  • Collaborative – all projects must establish open channels of communication and means of engagement with other parties in the bid at the time of their application (e.g. INTEROPen Ryver etc).
  • Transparent – all projects must be willing and evidence how they will partake in regular clinical and technical reviews. We suggest these should be in the form of bi-annual CCIO Network led review along with INTEROPen led Connectathons with a minimum of 3 out of 6 Connectathons undertaken.
  • Share Ideas, Knowledge, Experience – i.e. willing and able to openly collaborate with others in this initiative (e.g via online community building via tools such as the Open Health Hub, Ryver etc) and partake in Open Data connectathon against INTEROPen FHIR APIs

9) Judging process

Initial Bid and Review Point Principles

We suggest the related submissions into this fund will need to evidence the following as part of their bids and progress at agreed review points:

  • Clinical merit – against the Personalised Health and Care 2020 Vision
  • Technical merit – against the open platform principles outlined
  • Clinical gap / need / demand
  • Clinical Leadership – all projects need nominated clinical lead
  • User Centred Design – include/demonstrate a commitment to open publish UX design
  • Alignment with Agile Development methodologies
  • Business readiness (preparatory work, governance etc in place)
  • Collaboration with other parties in the open platform bid
  • Open Source track record

10) Conclusion

If public monies are for one purpose, they should be for the common good. Our proposal aims to ensure the efficient and effective allocation of public monies to projects that can impact the health and care of millions of citizens in England, supporting local NHS & Social Care organisations in their hour of need, while leveraging Britain’s long held reputation for industry and innovation to enable a new global open platform fit for the 21st Century.

Our proposal for an open platform technology fund aims to offer a means towards the integrated care vision of Personalised Care 2020 that is in the best interests of the NHS. In aligning patient, clinical and care needs with the investment potential offered by open platforms in healthcare, we believe there is a clear win-win on offer here.

At times of challenge and change the natural instinct may be to withdraw from risk or novel action, yet all our instinct is telling us that now is very time to embrace this challenge and seek the opportunity – which is why we are taking a public lead in getting this Open Digital Platform for Healthcare into action and welcome your interest and support in this effort.

Dr Tony Shannon, Ewan Davis
14th January 2017

Questions or Comments?
Email us at 1percentfund@ripple.foundation or tweet @rippleosi with #1percentfund

11) Declarations of Interest

Both of the authors are unashamedly proponents of an open platform in healthcare for some time. One might argue that this constituents a conflict of interest with the proposed approach. Rather we would suggest that our track record in leading the effort to disrupt the market towards an open platform, equates to a confluence of interest with the approach now required.

Dr Tony Shannon, Director – Ripple Foundation C.I.C
Director – Frectal Ltd

Ewan Davis, Director – Synapta C.I.C
Director – Handi Health C.I.C
Director – Open Health Hub C.I.C
Director – Operon Ltd
Director – Woodcote Consulting Ltd

12) Related Links

Ripple Foundation Community Interest Company http://rippleosi.org/
HANDI Health Community Interest Company http://handihealth.org/
Synapta Community Interest Company http://synapta.org.uk/
Endeavour Health Charitable Trust http://www.endeavourhealth.org/
Apperta Foundation Community Interest Company http://www.apperta.org/
INTEROPen Collaborative http://www.interopen.org/
openEHR Foundation http://openehr.org/
HL7 FHIR https://www.hl7.org/fhir

Appendix 1 – Open Platform Infrastructural Component Candidates

The aim here is to initially outline examples/suggestions of a “top 10” set of federated service components in a Service Oriented Architectural world that would be useful to in healthcare. In doing so we welcome further suggestions and related expressions of interest that would aim to provide open source solutions to plug gaps / provide enhancements towards the open digital platform movement. The fund may support the open sourcing of existing components or their development.

Identification & Authorisation
Master Patient Index
User Interface framework
Integration technologies
Clinical Data Repository
Terminology services
Workflow services
Rules engine
Scheduling
Business intelligence
Clinical content collaboration/authoring tools (i.e. openEHR/FHIR etc)

Applications for these open source infrastructure projects are encouraged to state their preferred OS license (weighting towards non copyleft (Apache 2/MIT/BSD) or AGPL licensing)

 



 

Wally Davis 4 Oct 1921 – 12 Sept 1996

My Father, Wally Davis, died 20 years ago today (12 Sept 1996), there has rarely been a day since when I have not thought of him, and to mark this occasion I’m publishing the eulogy I gave at his funeral at this link

wally-silas-and-iona-dodf

Wally was lifelong Socialist, a keen cyclist, a Londoner to his core, a pioneer in healthcare, but most of all a man deeply committed to his family.

Wally was a cyclist throughout his life and never held a driving licence. He wooed my Mother with a tandem and cycled to work and meetings in London at a time when this was somewhat looked down on and there were few cyclists on the roads in Central London. He would be amazed at the change in the provision of and attitude to cyclists in London today. I too cycle around London to meetings and while it is still probably seen as slightly eccentric for a man of my age and weight, It’s probably good for my street cred.

 

wally-bike-kings-head-yard-croppedAlthough my Parents moved out of London in 1994 Wally was a lifelong Londoner with an encyclopedic knowledge of its History and loved the city. He would be pleased that my two children now call themselves Londoners, who like me, share his knowledge and love of the city. He would also have been pleased that many of his predictions as to how London would develop have come to pass, particularly in relationship to the Borough (where he had his office for many years) and Greenwich, which he rightly saw as an undiscovered gem and was where we scattered his ashes.

Unexpectedly, catapulted in the the Medical Practitioners Union as it National Executive Officer in 1960 he played a central role in the transformation of General Practice that occurred in the 1960s – He pioneered professional management in general practice and the role of the practice team. He was early to recognise the potential of IT in general practice and it was his decision to launch the first specialist healthcare information provider on BT’s PRESTEL system in 1981, that persuaded me to change career direction and join him in setting up MEDITEL Ltd in 1981.

GP Computing was well established by the time of his death and I think he would be surprised that it’s changed so little since and that the rest of the NHS have still not caught up. While he survived to become an Internet user and the first mobiles phones he would be amazed by the changes these things have brought about, probably making him even more depressed at the NHS’s slow progress in taking advantage of these new technologies.

wally-and-nan-1989

Most of all Wally was a family man and in particular a Grandfather. He was lucky to know all but the youngest of his grandchildren but expressed regrets that he would probably not see them as adults. That this came to a place, and that he never knew Anna (my brother’s only child), are certainly amongst the few things he would have regretted about his life, but he would have been pleased how they turned out.

If you want to read more you will find the Eulogy here

12 Sept 2016

Patient data there for the asking, not the taking


The importance of using health data to target and optimise the care we deliver and to advance our understanding of medicine, health and care is undeniable and something we must do, but we really do have to secure public confidence in doing stop scoring so many “own goals”

As my good friend and colleague Dr Joe McDonald said recent in his column on digitalhealth.net “Patient data there for the asking, not the taking” and this brilliantly takes us to the heart of the issue.

When asked most citizen’s would be happy to have their health data used for a broad range of research purposes that bring health or economic benefit, but they do want to be asked and not asking them is a great way to trigger bloody mindedness and push up the extent to which people actively seek to opt-out as has been demonstrated by the 1.2 million opt-outs  generated by the crass mishandling of care.data.

We seem to be repeating these mistakes with the Royal Free giving data to Google without an adequate opportunity for patients to opt-out. Sources in the NHS tell me that the Royal Free are not the only NHS Trust to do this although no more names have yet been mentioned.

To have damaged public support and confidence in the way we have is both unforgivable and avoidable the result of arrogance and ignorance of those making the decisions with a failure to listen to the advice given to them and learn from the experience of others.
Firstly, it is necessary to acknowledge that we are talking about sharing potentially identifiable data. The work of Prof Paul Ohm  has graphically illustrated that even apparently very anonymous datasets can be re-identified. In the case of a rich datasets like those in EHR re-identification is trivially easy for those with a mind to do so It provides little comfort that is probably the last thing most researchers want to do.

Generating and maintaining public confidence is possible. Most people already understand the value of their data for research purposes and are willing to share even identifiable data if approached correctly. We only need to look to the likes of UK Biobank who have successfully persuaded over half a million people to share sensitive identifiable health data and actively participate in providing blood samples to support Biobank’s research work, with no prospect of direct personal benefit

In my view the key things that those wishing to use patient data for purposes other than those very directly related to the deliver of care to the data subject must do are:

  • Acknowledge the re-identification and privacy risk associated with share health data.
  • Take all reasonable steps to mitigate these risk with appropriate governance and the use of privacy enhancing technologies (making the effort to find out what these are and what they can do.)
  • Allow those who for whatever reason my wish to do so to have an informed opportunity to easily opt-out.
    Invest in technology and approaches that allow us to move towards an opt-in approach.

The Centre can’t say they weren’t told. Had they read and heeded “Fair Shares for All” produced by the BCS Primary Health Care Group under the leadership of Ian Herbert in 2012. Things might have been different (I have since discovered that those making the decision never read anything longer than 140 characters)
It’s a long document because there are no short answers to the complex issues it addressed, but to draw out a single paragraph that will give you a flavour:

“In summary we want to encourage patients and their clinicians to provide their data for laudable research purposes, and acknowledge the need to use it to administer and manage the NHS, but we must seek to retain public confidence while doing so. Patients accept the electronic processing of their health data for primary purposes, but should have reason to feel confident that it is protected and used properly”

The document will need some updating, particularly as new privacy enhancing technologies (e.g. block chains and homomorphic encryption) have become practical tools over the past 4 years, but it still remain highly relevant.

Digital Maturity Index?


It’s a good idea for health and social care organistaion to reflect on their digital maturity and understand where they are in relation to their peers.

The NHS Digital Maturity Index was a good proxy for what we all might reasonably recognise as digital maturity and potentially a great tool to stimulate reflection, benchmarking and change.

However, we seem to have forgotten what the likes or J Edwards Deming and Charles Goodhart have told us who said, respectively:

“Eliminate management by objective. Eliminate management by numbers and numerical goals,

Deming’s 11th point

As soon as the government attempts to regulate any particular set of financial assets, these become unreliable as indicators of economic trends.” have told us”

Goodhart’s Law

We’ve seen the same issue closer to home with the GP Quality and Outcomes Framework QoF which has been great at getting GPs to hit QoF targets, but not so great at addressing the crisis we currenty have in primary care.

Now the Digital Maturity Index has been linked to funding, career and organisational success people are understandably gaming it and it is ceasing to be a good measure of digital maturity, more a measure of gaming and political cunning that’s failing to deliver the organisational reflection that we desperatly need.

When are we going to learn?

Hiding the Onions – Interop and Open Platforms


With McKinsey telling us that open platforms can save more that 11% of total health care costs, we really have to sweep away the barriers and make it happen. This means moving to an open platform architecure meeting the principles I described in my last blog, which require open standards, open data and open APIs. While most in the vendor community understand this and some actively promote it for others asking them to open up their systems and data and adopt open standards is like asking the turkey’s to help make the stuffing – They might help you find the sage, but they are  going to hide the onions.

Many existing vendors recognise the need to move open standards, open data and open interfaces (APIs) but while some are moving in the right direction, they are not there yet Others drag their feet knowing their current success relies on existing proprietary solutions, customer lock and their pseudo-ownership of customer data. Getting to the tipping point at which open platforms can really take off is going to require new players challenging the status qou and a willingness from the health and care community to help them successfully engage.

The objective is to move towards what is now being described as a Post Modern EHR  this is an architecture that separates data (describing both record content and work-flows) from the applications that create and process it storing it in an open computable format available to all authorised applications.

There are almost certainly no vendors who think interoperability is a bad thing and this is exemplified by the techUK Interoperabity Charter, to which many vendors have signed up . While some have described this as “Motherhood and Apple Pie” in nonetheless contains some specific commitments and there is certainly no justification for any health or care organisation to do business with companies that are not signatories (it is not necessary to be a member of techUK to sign up to the charter). Having  signed the Charter should be a mandatory condition in the PQQ of any IT procurement in Health and Care.

However, vendors commitment to interoperability is not always what it seems and varies between companies and within companies depending on what particular aspect of interoperability at issue.

Most vendors are keen to facilitate interoperability that enhances the range and quality of data in their systems or which adds functionality that they don’t and and have no desire or ability to provide. Vendors are less keen to support interoperability that allows competitors products more easily to replace some or all of their system or which loosens their peusdo-ownership of their customers data – True interoperability does both of these things.

For a system to be fully interoperable the following needs to be true:

  • It should be possible to access all of the data in a system in an open, shareable and computable format, either for an individual patient or any cohort of patients (include all patients). Interfaces should be provided to efficiently access data and where the customer wishes to maintain a near real-time replica of the data in a parallel system.
  • It should be possible to upload to a system any data that could otherwise be manually entered into a system, subject to relevant  user defined work-flows and quality assurance.
  • All business functions that can be executed using a system should be exposed via an appropriate API to allow them to be executed by an authorised external application.

Looking at the API’s than vendors are now providing, few come close to meeting the criteria above. For some systems and to some extent there are real technical barriers to opening up systems and making the data they hold available in an open format, but there can also be pressing commercial reason for not opening up systems and it can be very difficult for customers to determine the extent to which vendors have genuine technical challenges to overcome or are simple looking for excuses to hang on the commercial benefits of limiting what can be done through their APIs.

Customers need to push vendors towards open platform architectures, open standards, open data and open APIs, but need to recognise that this transition cannot be achieved overnight and will require investment by vendors that will ultimately need to be paid for by customers. The trick is to link new business to an evolution to open standards without making unrealistic demands, that in the end you will have to allow vendors to ignore.

Vendors need to appreciate the value of open platforms and the commercial opportunities they bring. The increasing complexity of digital health means that I can foresee only two future options:

  • The first based on open platforms creates opportunities for vendors, particularly innovative SMEs, to enter the market and compete with the larger players on a level playing field and forces vendors to compete on quality, performance, support and value rather than relying on customer lock-in and pseudo-ownership of customer data.
  • The second is increasing market consolidation with a few very large  vendors owning competing proprietary platforms, that allow access to other vendors on their terms with customers locked into their platform

The first option drives innovation and value, creating a competitive market  for both the provision of  federatable open platforms and the applications that run it. The second will result poor value and reduces both the opportunity and motivation for innovation and gives the platform provider too much influence in the way health and care services are provided.

There is a great future for vendors of all sizes in an open platform environment, which by delivering value to the health and care system, will result in market growth delivering greater revenue opportunities for those that can adapt their business models to take advantage – For those that can’t there always the cranberry sauce.

Stuffed Turkey
By No machine-readable author provided. Chensiyuan assumed (based on copyright claims). – No machine-readable source provided. Own work assumed (based on copyright claims)., CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=1491125

Defining an Open Platform


It is widely agreed that the future of digital health lies in an “Open Platform”. However, it’s not clear as to exactly what an Open Platform is or how we get there. With McKinsey tell us that health care systems that create an open platform can save more than 11% of total health care cost this is a question we urgently need to answer

“…….each national or federal health system should consider an open innovation platform that holds healthcare data ……………., and provides data access that is enabled for application programming interfaces as well as common technical IT services such as identity, access, or consent management. This platform would serve as the basis for an ecosystem of digital-health-services innovation……”

“In 2014, we did considerable research into the economic value of digital technologies in healthcare and found ……..  net economic benefits of 7 to 11 percent of total healthcare spending. Over this past year, our work on the ground has confirmed this original analysis. However …………  we believe an even greater impact can be achieved through coordinated joint effort. This would involve the interconnection of all digital-health stakeholders through an open innovation platform.”

McKinsey and Co., Jan 2016

This blog is an attempt to do so on which feedback from others would be welcomed..

While any given instance of an Open Platform will be a specific implementation of a set of software components owned and operated by a particular organisation (this might be a health and social care organisation or a third party, operating the platform on behalf of a local health and care community), it is most usefully defined by a set of principles rather than the specific details of a particular implementation.

Open Platform Principles

Any platform implementation that is truly to meet the definition of being ‘open’ should comply with the following principles:

  • Be Open Standards Based – The implementation is based on open standards which any willing party can use, free of charge, to build an instance of the Open Platform – what these standards are will be described later in this article.
  • Share Common Information Models – There should be a set of common information models used by all instances of the Open Platform, independent of the specific technical details of a particular implementation.
  • Support Application Portability – Applications written to run on one implementation of the Open Platform can run with little or no change on another independently developed implementation.
  • Be Federateable – Any implementation of the Open Platform can be connected with all other independently developed implementations in a federated structure  to allow the sharing of appropriate information and workflows between them.
  • Be Vendor and Technology Neutral While those building an implementation of the Open Platform will chose particular technologies and may choose to use or include proprietary components, the standards should not depend on particular technologies or require components from particular vendors.
  • Support Open Data – An implementation of the Open Platform can expose all of the data it contains in an open, shareable, computable format in near real-time; it is for implementors to decide if they choose to use this format natively in their persistence (storage) layer of the Open Platform, or meet this requirement by means of mappings and transformation from some other open or proprietary format.
  • Provide Open APIs – APIs are the means by which applications connected to the Open Platform are able to access and update the data it contains. There are a number of available open APIs (see below) and ideally any platform should support a number of these to give the maximum flexibility for applications that wish to connect to it.

Open Platform Standards

Meeting these characteristics implies the use of certain approaches and the adoption of certain standards. However, it is important to understand that by its very nature an open platform, just as with the Internet, is not something that can be rigidly defined and indeed is something that will continually evolve. There are multiple ways to build an open platform and for these to work together we don’t need and can’t have rigorous standardisation; we need just enough of a common approach to make things work. This approach is different to that historically adopted in NHS IT, but it is the model on which the Internet and World Wide Web were built and have succeeded. See these two pieces on my blog here and here.

At the core of an open platform is the need for common information models, which define the clinical content (information) to be represented on the platform and which provide a sharable, open and computable format for that information. Currently there are only two approaches that have current support from the global health informatics community.  These are the Clinical Element Models (CEMs) and openEHR. They adopt very similar approaches, coordinated through the CIMI initiative. In the NHS, the HSCIC has chosen to use openEHR; which is the model that has achieved the most widespread global acceptance and use.

Information models, such as those created by openEHR can be used natively in the persistence (storage) and messaging components of the platform or be used simply to inform the design of these components using either another open standard such as HL7 FHIR, XML, JSON, or by using proprietary approaches. The critical point is that  an open platform can produce and consume data in a form compatible with the standard information models. It is for the designers of the platform to decide how to do this, but I would expect those building from scratch to use openEHR natively in the persistence layer and those adapting existing systems to converge their internal representation on these standards over time.

Open Platform Architecture

The architecture of an open platform will evolve over time and it is likely that different implementations of the platform will vary in the detail of the architecture and the particular components included. What’s important is not that different implementations are identical, but that they comply with the principles described above. The diagram below proposes a possible architecture. Any open platform of this kind is likely to have similar components, arrayed in a functionally equivalent architecture and to implement a similar set of standards.

Open Platform Architecture

The heart of the platform is an Enterprise Service Bus (ESB) which links the components together and provides authentication along with the management of the Application Programming Interfaces (APIs), which serve both platform components or services and external systems connected to the platform.

Core components of the platform include:

  • repositories for both structured and unstructured data (documents, images, etc);
  • a Master Patient Index (MPI) and Registry which stores basic demographic data and provides a locator service to help find where the records for a particular patient are held (e.g. on the platform, elsewhere in the local health community or on other federated platforms);
  • knowledge services that provide access to knowledge (particularly workflows, processes and decision support);
  • a range of external connectors which allow applications on the platform to connect to existing systems relevant to the local health community including other local systems and national services (such as NHS Spine);
  • a range of platform services, none of which are essential, but which, if available, remove the burden of dealing with the functions they support from application developers. These might include:
    • terminology services;
    • identity management;
    • consent management; and,
    • access control (role based access (RBAC) legitimate relationships (LRs) and workgroups.
  • Connectors and federation services to other platforms to allow platforms to be connected in a federated web allowing an authorised user to discover and access any relevant data in any location.

It is my strong view that the right choice for a structured data repository is openEHR and the right choice for the unstructured data store is IHE-XDS. (IHE-XDS also provides a suitable option for the registry). Both of these open standards are well supported by vendors with a number of proven proprietary implementations and emerging open source options. However, there are alternative approaches that could comply with the principles described above.

I don’t have fixed views with regard to the best approach with regard to the knowledge repository, but the work of Synapta to draw together a number of available standards including BPMN 2.0, GDL, CMMN, Drools and PROforma looks promising.

Examples of Open Platforms

There are a number of examples of open platforms that adhere to the principles outlined here and a number of people working to create more.

Established platforms that include both openEHR and IHE-XDS, working together include Moscow City support health and social care for 12 million patients and Slovenia support the entire population of 2 million. There are many more examples based on one or other of these standards that could easily be extended to do the same, including a number of UK projects.

There are also a number of other projects in the UK working together to refine the definition of an open platform and build implementations these include.

  • NHS England Code4Health This is based on my work with Dr Ian McNicoll for HANDI. The Code4Health Platform provides a simulated environment where people can explore open platform concepts and APIs and build applications to test their ideas.
  • Ripple who have an operational open platform based on openEHR in Leeds.
  • The Endeavour Health Charity who are building a platform using HL7 FHIR and a number of connectors to legacy systems.
  • Operon who are developing Synapta to provide components to support open workflow standards including BPMN 2.0, GDL, CMMN, Drools and PROforma

All of these projects are working together coordinated by the Apperta Foundation  (a clinically led not-for-profit company established with initial grant aid from NHS England) and are already committed to using a common set of information models created using the openEHR tools. The aim is to agree a common set of standards and components which will enable them to build implementations of open platforms which comply with the principles here. Each implementation will be different, enabling us to learn what works best, but similar enough to enable federation and interoperability.

We are actively talking to a number of projects in the pipeline and some other existing projects already using one or more of the core standards described here, so we expect to see many more open platforms complying with the principles outlined here. If you like to join us get in touch ewan@woodcote-consulting.com

 

The Future of Applications


I was recently passed a link to an interesting paper from Accenture “The Future of Applications – Three Strategies for the High-velocity, Software-driven Business”. This paper is directed at a general business audience, but has much of relevance for the digital health world and in particular resonates with the points I was trying to make in my recent blog  “Would you like to build Health and Care Software 100 times Faster?”

Picking up a few key points from Accenture:

“The fact is, many companies are trying to compete in the world of social, mobile, analytics and cloud with applications that were designed for another era. Monolithic applications are often built from the ground up— slow to implement and slow to change. “

Very true of the systems in health and care, not just the big megasuites, but most of the applications in use today.

“What’s needed is a new way to build software—faster, flexible and more liquid—with reusable components that allow for rapid assembly of applications in support of dynamic business needs. This approach requires modular architectures……”

In the context of health and care this sounds very much like openEHR.

The other two other key points the paper makes: The need to build intelligent applications and to build and nurture  [open] ecosystems also seem to provide further support for the work I’ve been in with colleagues in NHS Englands Code4Health Programme.

There is much more in the Accenture paper which is well worth reading and thinking about how we can apply its recommendations in the context of health and care. You will find the paper on the Accenture web site here.

Would you like to build health and care software 100 times faster?


I’ve written before about openEHR and how I think its time has come. I been talking to lots of people about openEHR and it’s clear it takes a while to really understand its power – It took me 15 years. In this blog I try and summarise what I think makes it different and special. If you are new to openEHR I suggest you read this first and then go to my previous blog and openEHR.org  for more detail.

OpenEHR is not a piece of software it’s an open specification from which software can be built. It has it roots as a way of creating electronic health records, but can be used to build records across the whole of the health and social care domain.

Its key benefits are:

  • It enables those designing systems to work at the information level rather than at the level of a particular technology separating
    • “content” – the domain of the clinician or social care professional
    • from “technical infrastructure” – the domain of the software engineer
  • enabling both to concentrate on their own domain without needing to worry about the complexity of the other.
  • It’s independent of any particular vendor or technology – There are multiple implementations from a number of vendors, built on various technologies, including open source options.
  • There is a vibrant global openEHR clinical community creating archetypes (the building blocks of openEHR), which are generally “open source” and can thus be freely shared, used and adapted. See Wooland’s  Cat for more on this 
  • There is an active vendor community which supports the clinical content development and a number of examples of implementation at scale, mainly outside the UK where it was invented!
  • The specifications are amazingly rich. There is very little than its creators have not covered including:
    • Interoperability, openEHR makes it easier to achieve interoperability than not.
    • Multilingual support and language independence
    • Federated multi-vendor implementations, with cross vendor querying
    • Complex access control capabilities
    • Intermittently connected devices
    • Versioning and backward comparability
    • Cybersecurity
    • Privacy protection and consent management
    • Terminology bindings

However, the most remarkable and powerful feature of openEHR is its ability to support new requirements with minimal changes to systems. To support a new requirement it is simply necessary to create new archetypes. These will be immediately deployable, storable and queryable; will not require any database schema changes, won’t affect parts of the system not connected with the new requirement and won’t break anything – This means that new requirements can often be deployed in hours rather than months. Let me explain further:

New requirements generally mean new information has to be collected and stored. Anybody, who has worked at the database level will know how problematic this can be. You have to modify the database schema, modify existing tables, maybe create new ones and then migrate data from the old schema to the new. In a database of any complexity it’s easy to break things and can require the rework of lots of software unconnected with the new requirement. While modern databases have tools that can help developers avoid schema changes like the plague and when they do consider them, the rework and testing required means that changes will be expensive and slow if they happen at all often leaving people with no recourse than another  Feral System

Supporting new models of care means being able to meet new requirements 10 – 100 faster, by utilising openEHR’s ability to incorporate changes simply by creating new archetypes, the large preexisting set of open source archetypes, its openAPIs we can now achieve this.

If you not looked an openEHR already then I suggest you do and if you loked at it a while ago I suggest you look again.

This video produced by Dr Wai Keong Wong (@wai2k )provides a useful introduction to openEHR

Please! Not another “White Knight”


News has been leaked this week by Computing  of plans by NHS England to create a new post of Chief Information Officer/Chief Technology Officer to replace the role that Tim Kelsey will leave vacant at the end of the year.

On the face of it this seems to be a good idea, but my experience over many years gives me some concerns that such an appointment may not have the positive effect hoped for.

Over my 35 years in the sector I have seen a string of able people come and go in the top leadership positions in NHS IT. Generally they have been presented as the Messiah, someone with simple answers to complex problems, a White Knight (or Dame) with Silver Bullets that will result in IT or what we now call Digital, to enable a radical transformation of health and care.

A radical transformation is clearly what we need Digitally Enabled Services and Big Data are two of a very small number of tools available to us with the potential to make a major contribution to addressing the challenges in health and care readers will well understand. But, the answers to the complex problems we face are not simple, but are themselves are complex, and there are no White Knights or Silver Bullets.

As I said in an earlier blog

I’m pretty certain that the health informatics community know how to create the open digital ecosystem we need to support the emerging new models of care, but I have concerns that a lack of knowledge and experience amongst policy makers, vested interests in the care, informatics and vendor communities and a naive belief in the Tooth Fairy. Might mean we don’t achieve what’s possible.”

Leadership is critical to success, but we need leaders with a profound understanding of the domain who can harness the undoubted skills and goodwill in the care, informatics and vendor communities and who have the confidence to resist those with vested interest who insist they have simple answers.

Lets look at the characteristics of the various people who have held the top jobs over the past 35 years? In general, and there are exceptions, but these people.

  • Are intellectually very able.
  • Have a track record of doing amazing things – Although typically they overestimate the extent to which this was due to their brilliance and much underestimate the fact that they were just lucky.
  • Manage to dazzle those that appoint them, but turnout to be human after all.
  • Have limited prior experience in health or care, particularly on the front line.
  • Suffer from various degrees of narcissistic  personality disorder .
  • They don’t do “critical friend” and thus tend to get surrounded by “yes men” and sycophants.
  • They stay for no more than 3 to 5 years – Many have had the sense to get out before the job destroys them, some have not.

What do I want to see in any CIO/CTO? Well firstly it’s probably not a CIO or CTO but rather its closer to CCIO (Chief Clinical Information Officer), although it’s not exactly any of these things. They need:

  • A profound understanding of how the UK health and care system works at the front line. This is unlikely to be achieved without at least 10 years experience of working at the front line as a health and care professional in the UK or in a role directly supporting such front line staff.
  • A profound knowledge of health policy and practice and of the research/evidence base of how this might be developed.
  • A profound understanding of Health and Care Informatics – To me health and care informatics is the science of how health and care information and knowledge can be represented in a computable format an the techniques for it processing, it is not fundamentally about the specific technologies.
  • Experience of working in a politically and organisationally complex environment with the gravitas and robustness to survive in such an environment.
  • A personal and management style that can build and work with a diverse team of people who will continually challenge what’s being done.
  • A willingness to engage with unprecedented openness and collaboration with all of those in the care, informatics and vendor communities, including citizens, carers, patients and service user.
  • Enough knowledge and experience of software design and engineering to critically appraise what others tell him, but this is not a job for someone with primarily generic CTO/CIO skills.
  • Finally, they need to understand that this job is about making the best health and care systems in the world1, better by harnessing the commitment, knowledge and experience of those in the care, informatics and vendor communities that have put us in the enviable position.

Finding someone to take this role is going to be a challenge, but it is possible. It’s highly likely that the person we need is already working in the system. The last thing we need is somebody from outside of health and care or outside the UK. No matter how able they are they won’t get to point of understanding the challenge in the time we have to meet it (2020?)

Whoever is appointed let’s make sure we don’t place impossible expectations on them. They can only succeed if they can engage with and harness those in the care, informatics and vendor communities who already know what needs to be done, their role is not to tell us what needs to be done, but to enable us to do it.

Nobody should (can) “own the platform”


I’m sitting in the Interoperability Workshop in London being jointly organised by NHS England, The Health and Social Care Information Centre and The Local Government Association (3 June 2015).

In the UK like there are a large number of projects trying to deliver integrated care that need to achieve integration of IT systems and data across multiple organisations and systems. Most of those speaking here today are trying to follow an open approach but some seem to be achieving more rapid progress implementing proprietary systems. In many ways this is to be applauded, but there is a risk that it leads people down a cul-de-sac and creates vendor lock-in.

Globally the health informatics community agree that we need to move away from enterprise based monolithic systems and bespoke “best-of-breed” integrations to community wide systems based on a platform architecture that allows components to plug-and-play sharing information, knowledge and work flows in a computable format.

For vendors the commercial opportunity of “owning” the platform is massive and many vendors from the very large, to wildly ambitious start-ups are trying to achieve this. However, in my view, and that of a growing number of others, is that an “own the platform” approach is both doomed to failure and not in the public interest,

It’s not in the public interest because it creates vendor lock-in and while in the short-term the right vendor might offer the lowest risk approach to short-term success in the medium-term vendor lock-in mitigates against agility, innovation and the achievement of good service and best value.

It’s doomed firstly because governments, health and care providers and payers increasingly understand my point above, secondly because of competitive pressures in the market; google won’t let apple, won’t let Microsoft, won’t let amazon, won’t let IBM, won’t let EPIC, won’t let TPP won’t let Orion etc and finally because unless we adopt open approaches we won’t be able to address the federation of platforms which is essential to deal with the inevitable flows between communities.

The smart money will invest in the creation of open platforms (spending a lot less than is required for an “own the platform|” play) and build business models that exploit rather than own the platform (like the Internet works!)

Those responsible for commissioning digital systems need to ensure open standards, open interfaces and open data and avoid being seduced by the vendors of proprietary solutions.