There is a widely held view that 21st century care is under ever increasing pressure, in a on-going state of near-crisis, in leading systems such as the United Kingdom’s National Health Service (NHS) (#NHSWinter campaign / http://www.bbc.co.uk/news/health-34353408) and across the globe. The burden of disease, an aging population and the limitations of our related resources are becoming ever more apparent. It is also acknowledged that at the frontline, staff are working under immense pressure, in unsustainable ways. Change is needed to improve the quality, safety, timeliness and cost effectiveness of 21st century care.
Health and care commentators are, for the most part, agreed that Information Technology (IT) is a key driver for change, yet many are also aware that its great potential remains untapped. The gap between the hope and the reality of the promise of improving care via effective IT remains one of the key challenges facing the care industry today.
History has provided evidence that these complexities are not going to be fixed by a single act or system being imposed from on high. Instead change has to come from within and across the health and social care landscape. The Ripple Open Source Initiative has emerged from this need for transformational change, and the related need for an open health information technology platform to positively disrupt healthcare.
I am Dr Tony Shannon, program director of Ripple, and my background interest in health IT stems from my personal experience of working with healthcare IT systems as an emergency physician for 20 years, including 10 years working within the emergency departments of one of England’s largest hospital trusts – the Leeds Teaching Hospitals NHS Trust. Aside from learning about (including frustrations with the poor state of) usability and integration at the frontline, I also learned a lot from my time within the UK’s ambitious, and for the most part flawed, attempt at a multi billion pound NHS National Program for IT (NPfIT), which was also based in Leeds.
From those experiences and other lessons earlier in my career with a small innovative team based in Washington Hospital Center (later to be bought by Microsoft), after leaving NHS NPfIT I started to push a user centered and iterative agile development approach in Leeds Hospitals that helped us progress a clinically led Electronic Patient Record (EPR) program, now called PPM+. That work then led onto a related integrated care record program across the city, i.e. the Leeds Care Record, of which I became program director. Leeds Care Record took an integration approach to systems from across the city’s care settings to provide a more holistic view of patients. Built upon the Leeds Teaching Hospitals in house developed EHR (PPM+), the Leeds Care Record it is now live across all 107 primary care practices in Leeds, serving a patient population of approximately 800,000. It now integrates primary care, hospital care and mental health data into one patient centered care record.
Meanwhile elsewhere, many clinical staff continue to find it difficult to work effectively with existing health IT solutions, it remains hard for disparate clinical groups to deliver integrated patient centered care and it is too hard for clinicians to keep up with the latest evidence based practice without better information and better tools. In essence the Health IT market needs major change to deliver and develop those systems which are required to support 21st Century high quality, safe clinical care and self-care.
The Ripple Program, based out of Leeds and building upon the lessons learned from the Leeds Care Record, has recently been set up to positively disrupt health & social care towards those ends. Importantly the ethos of “open” is at the heart of the work and for very good reason. It is clear that interoperability between Health IT systems will drive real change but, what is even clearer is that only an open source approach will positively disrupt this health and social care landscape across the NHS and across the globe.
Funded by NHS England and hosted by Leeds City Council, the focus of Ripple is to support health and social care organizations by providing six open source elements which can be used individually, in combination or as a whole, and are consistent patterns of need when embarking on an work towards healthcare improvement with information technology.
The Ripple Open Source Initiative
|Three foundation modules||Three technical modules|
From the outset, Ripple has been an open and collaborative effort.
Open Requirements has evolved from feedback from leading health and social care organizations about their key information they and their partner organizations require. In turn this helps to develop a business case which supports the change required when deploying related healthcare IT. In drafting a first version of an open source business case template, Ripple has deliberately sought feedback and comments so that the document can iterate and incorporate the experiences and evidence from other areas.
Open Governance focuses on standardizing governance arrangements for the sharing of information across different care settings. Practical outcomes are the publishing of a Plain English Guide to Information Sharing, a Data Controller and Processing Contract template and an information sharing agreement template which are based, in part, on learning from the Leeds Care Record. Information sharing continues to be a major barrier for integrating organizations to cross and it was clear that the development and open sharing of these templates provided organizations with desperately needed guidance.
The third foundation module is Open Citizen, which brings together the learning and experiences of the leading health and care organization in communicating effectively to the public about data sharing and building trust. Ripple uses the methodologies, approaches and, importantly, research findings from different types of patient engagement to ensure that citizens have the opportunity to be involved in the development of a system that, after all, holds their information. Related open citizen engagement materials have already been openly shared and further iterations are in train.
The remaining three elements of Ripple are set around the open platform, providing organizations with a real alternative to proprietary based EHR solutions and supporting a push towards a more services oriented health IT market, built around an open platform.
Open Viewer is an open source care record User Interface framework, clinically led and built against the key common patterns we find in the open requirements identified. We believe that top quality usability and a great user experience are absolutely essential to support front line staff - just take a look at ZDoggMDs recent EHR State of Mind to see where health IT usability is coming from.
Open Integration involves the development of an open source integration engine and Open API’s to support system interoperability. Related work is led by Endeavour Health, a healthcare IT charity set up by EMIS founder Dr David Stables to drive open source interoperability in the NHS. Ripple is collaborating with Endeavour and other healthcare innovators to blaze a trail for open source integration in health and social care.
The final module, Open Architecture is focused upon the use and widespread adoption of OpenEHR as a robust, scalable and importantly clinically led healthcare information architecture. We , along with an ever growing international community believe this is essential to underpin any EHR platform. The Ripple platform currently uses Marand’s Think!EHR and work is well underway collaborating towards an open source OpenEHR alternative to support this growing appetite.
To support these technical modules, Ripple has set up a developer site where all partners in the project can share coding, testing and development information. The site is in its early days but the intention is that it becomes a technical hub for related open source EHR development.
Ripple has big aspirations to help transform the health IT market with a number of areas in England. The NHS of the next 10 years will look very different from that at the beginning of the 21st Century and Ripple through it’s open and not for profit approach is well placed to provide an EHR platform for the future NHS.
But it is not just England who can benefit from this approach. The common patterns and themes explored by Ripple are absolutely reusable and universal, so this makes it a real “open offer” to the rest of the world.