This short video is part 2 of a 3 part series to help explain openEHR, the future of healthcare IT.

Watch. Learn. Share. #openEHR

 

This short video is the last of a 3 part series to help explain openEHR, the future of healthcare IT.

Watch. Learn. Share. #openEHR

Ripple Foundation’s showcase stack encompassing three open source elements – front end UX/UI framework, middleware and backend/data repository.  Each component harnesses the power of open source and aims to demonstrate open standards in action to show that there is a different way to provide technology to our care professionals and patients.

Ripple Foundation was established in 2016 to support the adoption of an open health and care platform internationally.  As part of its mission, the team has supported the development of a leading edge UX/UI framework which they’ve recently launched called PulseTile. The clinically led team has also been reviewing complementary products and components that meet the increasing demands of the modern day health and care system.  They are proud to support and promote the incredible versatility of both the middleware – JSON API oriented QewdJS framework led by Rob Tweed of MGateway Ltd, plus the openEHR compliant backend of EtherCIS led by Christian Chevalley of ADOC Software Development.   

Dr Tony Shannon, Director of Ripple Foundation said, “We are promoting Ripple Foundation’s showcase stack to demonstrate how health IT can be done in the complex and highly pressurised health and care system.  For years care professionals have had to put up with inadequate, antiquated clinical systems and we believe this showcase stack shows what can be applied to any health and care setting to help provide a better solution for both the clinical requirements but also the business needs of health and care technology.  Information and data that you can access, store and exchange securely is an option if you adopt an open source, open standards underpinned by open architecture approach.

“I’m calling out to the health and care community to take a look at our showcase stack and have a play with what’s now openly available to reuse.  At Ripple Foundation we are here to support you and can answer any questions you may have and help to move health IT into the 21st Century.  

Tony continued, “We are also appealing for an open digital platform challenge fund that we have called #1percentfund.  Diverting 1% of available healthcare IT funds to an open digital challenge fund we believe could improve the care of 99% of the population by stimulating and supporting both the creation and adoption of an open digital ecosystem internationally.  We hope this Open Platform Challenge Fund could help any interested clinical and technical leaders out there to implement a different approach to issues we are facing.”

It is clear that Health IT is not good enough to support 21st Century care, Ripple Foundation believe their showcase stack components, used separately or in combination will help to meet the needs of clinical systems that are easy to use but also communicate and interoperate using open source and open standards.

The showcase stack can be explored from the Ripple Foundation website, including full “showcase stack” documentation.

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 Deadline now passed.   


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 bodies and large commercial entities – Match 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://ripple.foundation
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)

 



 

How to turn the Universal Capabilities within the Local Digital Roadmap – in the financial reality of the NHS.

Local Digital Roadmaps set out how to achieve the ambition of paper free at the point of care by 2020 for the NHS.  77 areas across the nation have submitted documents and assessed themselves against ten universal capabilities.  This has left many areas wondering how they can achieve this with tightened budgets, limited resource and tight deadlines.

Building towards an open source platform underpinned with open standards can help achieve the following universal capabilities.  

  • Professionals across care settings can access GP-held information on GP-prescribed medications, patient allergies and adverse reactions
  • Clinicians in U&EC settings can access key GP-held information for those patients previously identified by GPs as most likely to present (in U&EC)
  • Patients can access their GP record
  • GPs can refer electronically to secondary care
  • GPs receive timely electronic discharge summaries from secondary care
  • Social care receive timely electronic Assessment, Discharge and Withdrawal Notices from acute care
  • Clinicians in unscheduled care settings can access child protection information with social care professionals notified accordingly
  • Professionals across care settings made aware of end-of-life preference information

How?

By contacting Ripple we can help you access the following to help build your open integrated platform to deliver your Local Digital Roadmap Universal Capabilities:  

  • tailor the open platform solution to your own individual requirements
  • clinically led technology – built with clinicians for clinicians
  • focused on user experience – helps to drive usage
  • adaptable technology – use UI/middleware/backend in combination or separately
  • future proof – built on openAPIs that are positively promoted by NHS England and NHS Digital with robust records architecture underpinning (openEHR)
  • flexible – small or large scale
screen-shot-2016-12-09-at-10-38-04

Medications

Appointments

Appointments

Vaccinations

Vaccinations

What next?

If you are interested/committed to collaborating, simplifying, standardising and sharing with others in an open manner, please get in touch.

Get involved in the latest web enabled real time communication (webRTC) which is being developed within the Ripple showcase stack.  

This open source video consultation software has endless opportunities for use across the health system from GPs communicating directly with patients at home, to multi-disciplinary teams from around a city meeting to discuss patient’s needs.  Currently the clinically led open source webRTC offers voice, video and text functionality.

Ripple want to work with the community to ensure it meets the needs so please get involved.  Ripple is building an open integrated care platform that meets the needs of 21st Century care and telehealth is a big step on this journey.

Attached are some screenshots of the work progressed to date.  If you want to know more please do contact info@ripple.foundation  

Clinician view

Ripple_Telehealth_wWebRTCtest1 2

Patient view

Screen Shot 2016-07-27 at 21.13.41 (2)

Appointments and chat history

Screen Shot 2016-07-27 at 21.24.17 (1)

 

 

The letters IDCR are currently used in the NHS in England as an abbreviation for Integrated Digital Care Records, part of the latest push to transform health and care in England in the 21st Century towards more holistic, integrated, patient-centred care,  supported by the right healthcare IT.

The abbreviation IDCR is the latest in a line of health IT abbreviations or keywords to symbolise the information technology that healthcare needs/wants/requires. Those include EPR (Electronic Patient Record), EHR (Electronic Health Record), portal, SCR (Summary Care Record), CDR (Clinical Data Repository), patient registries, etc, etc. Though such terms and abbreviations might suggest that the health IT “buyer” has a range of technical products from which to choose, it is increasingly understood that any of these tools are simply technical artefacts amidst a sea of change.

That 21st century healthcare change that is upon us is a “complex change challenge” made up of people, process, information and technology. We also know that to make such complex change happen we need a mix of clinicians, managers and technical team to work together, for the greater good, for the patient.

Involved in such change over the last years, I’ve seen many related change efforts and am aware of the significant challenge in aligning clinical, managerial and technical language and purpose effectively towards these noble goals. There is often an inherent tension between the clinical/business change desired and the technical tools on offer. Ideally a well informed clinically led team will have a deep understanding of the process they want to improve and access to/control of a technical tool that meets that clinical/business need.  More often these multidisciplinary teams are convened towards a common health improvement goal, yet a little/lot unclear on how the IT will get them there. In many cases this desire for change ends up as a clinical and business push ends up tied to a likely technical product. The current push in the NHS around Integration Pioneers and Vanguards and Integrated Digital Care Records is a case in point.

Clinicians who join these explorations and discussions often struggle initially for a reference point. They may cite the health IT system that they themselves know and/or love/hate, it may be a clinical guideline (or related proforma) that they have a particular interest in having supported in this new world, or a particular clinical report that they want/need to support here and now. They use these as reference points as these are the healthcare information and knowledge artefacts that they know.

In bringing clinicians together around a healthcare improvement/IT project (e.g. EPR, IDCR, Registry etc etc) to gauge their “clinical requirements”,  then analysing those requirements to generate a related system design etc, significant clinical time and real intellectual effort is required by all those involved.  If the aim of these efforts is about patient centred healthcare improvement, the focus of these efforts could/should involve a look at clinical guidelines, forms, reports etc to inform the approach. Yet if one teases apart just one clinical guideline, one discovers the rich tapestry of information and knowledge embedded within. Splitting a single guideline apart in technical terms into the clinical content, workflow and clinical/business rules involved helps explain how and why traditional approaches to programme and project management struggle at scale in this field. The lengthy, detailed documentation that can result from such efforts to elicit “requirements” does little to contain the challenge here. Indeed such an approach to procurement and the related documentation can become a key part of the change challenge… and so a key gap between clinical need and technical direction can begin to emerge..

Is there an alternative approach to this “complex change challenge”? We think so.

Firstly we emphasise the word complex, to reinforce that this change challenge is about managing complexity, more akin to curating an ecosystem than crafting a machine. We offer the following tips based on our experience of these challenges at scale and with some reference to the helpful Gov.uk Government Digital Service standard.

Tip #1

Q: How to quickly scope a clinical change project with health IT?
A: Put the user in charge of these (clinically led) proceedings, with the support of an agile design team.
Follow the principles of User Centred Design and Agile Development with early “wireframes”/”mock-ups”/prototypes.   The tools involved might be as simple as a sketch on paper, a PowerPoint slide or an online mockup tool (e.g. Lumzy.com). Either way this allows the clinical teams to express their needs and wants in terms of usability.. perhaps the most critical factor in health IT adoption. If their ambitions are big and dreamy, so be it, it’s a vision to aim towards. Of equal value, these visual designs help management and technical colleagues discuss and establish what is “do-able” within the time and budget available. Such prototypes are perhaps the simplest and most effective way for clinicians, managers and technical folk to communicate the scope of the change involved. A picture tells a thousand words.

Tip #2

Q: Where to focus the early effort in a major healthcare improvement project with health IT?
A: Focus the diversity of the clinical community involved around its common interest in core/generic clinical content.
One of the main challenges in bringing a multidisciplinary team together is the difference in culture, language and agendas in the room. Such discussions are full of rabbit holes for the unwary. (Try agreeing a consensus definition in such a room on terms like “Care Plan” or “Care Pathway” if you want to while away some time). Aim your focus on getting the clinicians in the room to find their common ground.. the needs they both/all share. These common needs are invariably linked to the core generic processes in health and care, although this is often poorly understood by those in the room. On a related note, focus firstly on the shared clinical content that is required, but not the workflow or rules involved.  While consensus on clinical content can be gathered more easily (via openEHR archetyping for example), clinical workflow and clinical rules are generally less amenable to early consensus.

Tip #3

Q: Who should own this requirements & design process? The healthcare customer or IT supplier?
A: The healthcare customer, aka the clinical lead and core clinical team involved, supported by “in house” project management and technical architecture expertise.
In our experience there is a compelling case that the process of requirements analysis and the related design authority should be overseen/owned by the healthcare “customer”. This should ensure that these key aspects are guided by the clinical need, not by the supplier want.
We would go further to suggest that you aim to ensure the key clinical requirements captured in this process are opened up and widely shared. That could/should include both the visual mock-ups (e.g. JPGs etc) and clinical content specifications (e.g. openEHR archetyping helps again here) –  so that you have captured and kept these in a vendor neutral format for supplier engagement purposes, while other clinical colleagues can learn from, reuse and recycle this same material.
The natural extension of this thinking is to suggest an Alpha “Discovery” phase to bring early health IT requirements to life in an open source reference implementation. The potential benefits here are at least three fold, its serves as (1) method of engaging the healthcare change project team with proof of what can/cannot be easily done (2) a means of bridging the significant gap between local frontline health change agents and national health IT standards setters (3) a means towards a “bi-modal” health IT strategy – keeping your future options open/avoiding vendor lock in

Experience in Leeds has highlighted these 3 key tips in a real life setting while illustrating the nature of such change. What began life as the Leeds Clinical Portal project morphed over time into the Leeds Teaching Hospitals EPR platform (named Patient Pathway Manager +). That in time became the platform that has served/is serving the Leeds Care Record, an Electronic Health Record for the people of Leeds. That journey from portal to EPR to EHR was not about swapping technical artefacts in and out, it was about change in a complex environment. Change that was clinically led, user centred in design, agile and evolutionary in development. That journey continues today in the ethos.

So if you think you are in the market for an IDCR… think again.

Starting with the Public

Below is a news article from Joined Up Leeds, something we are very proud to be collaborating on. For anyone considering undertaking Person Held Record (PHR), whether developing or looking to implement, this should be of real use.

Joined Up Leeds

Background

Leeds has a vision to be the best city for health and wellbeing and to be a global leader for health innovation. Using and sharing information about citizens underpins this ambition yet there is often hesitancy around sharing information, even when this may lead to improved health outcomes and reduced health inequalities. Involving citizens in the discussion from the beginning is crucial.

Joined Up Leeds was developed as a two week period of conversations taking place across the city. Citizens discussed how their health and wellbeing data could and should be shared, the benefits of sharing, the concerns they have, and how information could be used for the benefit of people in Leeds. This report summarises the initial main findings.

Joined Up Leeds researches the desires for a Person Held Record

Leeds is also a leading city for data, with many different initiatives driving the way health and care information can be used for the benefits of people. The development of Person Held Record forms part of the city’s strategic direction, enabling people to better manage and plan their health and wellbeing.

The leaders in the city were keen to find out whether Leeds residents want a Person Held Record.  Leeds Informatics Board, in conjunction with Ripple, commissioned Brainbox Research, an independent research agency based in Leeds, to encourage people in the city to talk about having a Personal Health Record.  Questions were asked around how they would use it and how it might affect their health. Four themes evolved from the engagement with the eight focus groups:

  • Making it work for me – how a Person Held Record could encourage individuals to actively engage with it.
  • I control my information – individuals want to decide what to share and who to share it with.
  • How to reassure me – discussed concerns and extent to which the record would provide unique value or replicate services that are already in existence.
  • Potential impact – to increase the amount of control individuals feel over their own health and wellbeing.

The full report is available here to DOWNLOAD

 

What NextRipple_landscape_lo_14B4EB5

The results will be shared nationally and will be used by Ripple, a clinically led technical team hosted by Leeds City Council, to build an open source Person Held Record demonstrator that will be further tested by a small group of people in the city.  The Person Held Record demonstrator will initially be designed to include the “core information” that people highlighted, for example, NHS number, allergies, blood group.

Ripple Foundation

Ripple Foundation is also helping the adoption of an open integrated digital care record platform that is built for the future.  Open source refers to something that can be modified and shared because its design is publicly accessible, therefore the work done in Leeds can be adopted and then adapted for other areas across the country and beyond.  An integrated digital care platform allows health and social care workers involved in a person’s care access to the most up to date care information about that individual, no matter which digital system their organisation uses. The flexible nature of the open approach and technology can meet a wide range of other related needs, from small health and care departments up to regional care records.

Ripple Foundation is committed to working with others and wants to want to change health and social care for the better with the inclusive approach to learning, sharing outcomes and experience with a blend of open source technologies.   If you would like to learn more about Joined Up Leeds and the work that Ripple Foundation is undertaking, please email on info@ripple.foundation or tweet on @RippleOSI

Much has been written about the impact that open source approaches to information and technology are having across the whole of society.  A new chapter, some of which is still being written, is emerging and challenging the way that individuals, communities, organisations and governments interact with each other.

Open data is enabling us to see the world in new ways as untapped patterns and systems emerge and these can be extremely powerful. In healthcare, the recent creation of Open Prescribing by Ben Goldacre and Anna Powell-Smith at the EBM Data Lab is a superb example of how using open data, anonymised GP prescribing data routinely published by NHS England, can be used to create a tool which could have a huge impact on prescribing patterns and spend.

Primary care prescribing spend totaled over £8 billion in 2013/2014.  Open Prescribing cost £50,000 to develop and yet, just a quick look round the site uncovers the huge potential for efficiency savings and better decision making.  The telling thing is that this data has been published for years, but it just took an innovative vision to collating, rendering and presenting the information to provide a real insight into prescribing decisions across England (this makes it sound easy but it was clearly somewhat more complex). Those behind Open Prescribing are hoping that the site will be used not only by commissioners and providers but also by individual patients, wishing to understand their own practice prescribing patterns in comparison with others.  Open data is enabling a change of the prescribing dynamic.

Here at the Ripple Programme we too want to change the dynamic of health and social care through the adoption of open source principles and methodologies.  These are allowing us to develop a range of templates, standards, APIs and user interfaces which are deliberately adaptable for use across any health and social care ecosystem.  And open source means that, unlike closed vendor dependent systems, there are no licence cost implications, no vendor tie in through lengthy contracts.

Ripple was initially established to support NHS Integration Pioneers in the development of their integrated digital care record programmes and we have deliberately taken a community approach, encouraging other pioneers to contribute to and shape our offers.

Open source is dependent upon sharing, it only flourishes because people are wanting to share their ideas and can see the value that expanding learning and ideas brings and for Ripple this is very important.  The programme is reliant on like minded developers, organisations and individuals who are able to see the mutual benefit of disrupting the healthcare IT market.  Iteration and improvement of the Ripple offers will not happen without this reciprocity.  The aim is for the organisations and localities who adopt the Ripple offer to be able to contribute to a mutually improved product – for their learning gained during implementation to feed straight back into the development so that future adoptees can also benefit.

Therefore, in a similar way to Open Prescribing, we are anticipating that a relatively small outlay to develop and invest in an integrated digital care record will unlock huge efficiency and resource savings across whole communities.

As clinicians, we share a common purpose: to heal, to alleviate suffering and to comfort. In the 21st century, the explosion of knowledge has increased our armoury to achieve our aims. We share our discoveries freely and subject them to peer review, publish them in journals, print and online. We acknowledge one another’s contribution, build on it and share it back to the wider community. We rarely license or commercialise the way we work. That is the community and values that I grew up in as a doctor.

Then Health IT happened. I discovered a whole new world of license fees, non-disclosure agreements, patents and intellectual property. As a clinician in the NHS, this was all foreign to me. Something didn’t feel quite right about not being able to easily and freely share my new digital way of working with my colleagues.

I recognise that there is intellectual property in the development of software. Everyone who has ever used a well crafted smartphone app can attest to that. However, the issue that I have with software related to Health IT is that any software really has no value unless it is properly configured and designed alongside clinicians and frontline healthcare workers.

For example, clinical input is required for defining and designing data models, data sets, outcome indicators, clinical decision support logic, user interface elements and patient pathways. I want to be able to share this with my colleagues regardless of the IT system that they use. Currently, this is technically very difficult even if the vendor does not actively prevent us from doing so.

So at the moment, sharing of IT best practice is limited to organisations using the same system. Indeed many large vendors use this as a selling point. ‘Buy our system and become more like these internationally famous hospitals.’, they say. ‘You can use the things they built, see how they work! Join the club!’.

The clinical community does not work that way. We collaborate across organisations, across international borders and definitely across IT systems! We need a technological approach that supports this. This is why I’m so excited about Ripple. In using openEHR, Ripple supports a vendor and technology neutral way of defining health IT information models, the DNA of any electronic health record.

This is the same approach that we want to take with OpenCancer. We want to define the data models required to support cancer care and research in openEHR. Based on this, we also want to provide decision support based on openEHR. Continuing the theme of using open standards, we will also like to support exchange of patient pathways using open notation languages such as BPMN.

Clinicians and the community in which we work in immediately relate to the values of sharing and collaboration. It is time we used Health IT approaches that align with our values. Ripple, together with similarly minded organisations like the openEHR foundation, openEyes foundation, open mHealth are showing us the way. OpenCancer will inevitably join the fold.

These are exciting times!

 

Dr Wai Keong Wong, UCLH, London, November 2015