The word ‘opportunity’ is defined as ‘a time or set of circumstances that makes it possible to do something’ which help to introduce our story of now.

As one of 25 Integration Pioneers, we have been given the opportunity to blaze the trail for change and new ways of working to support Health and Social care. With our successful bid to NHS England’s Integrated Digital Care Fund (IDCF), as mentioned in  our earlier story (the story of us), we have been given the opportunity to work with and support Integration Pioneers and the wider community on their own journeys towards integrated digital care records.

Across health and social care organisations, the top priority is to provide the very best care for people, to improve their care outcomes and ultimately to improve the lives people lead. We recognise that to do so we need to support the practitioners working across health and social care by giving them better information and better tools in order for them to provide the very best care.

Integrated digital care records therefore play an important role in the drive towards improving care. They bring together information from various care settings to provide a more joined up view of a person’s care. Without, there is a disconnect in care journeys as the information doesn’t flow between care settings, causing delays, inefficiencies and potentially impacting the care provided. With this technology change begins as people and process evolve to truly deliver integrated and thereby improved care.

The 25 Integration Pioneers on this journey recognise the need for integrated digital care records, as an important part in this change equation, allowing staff to work smarter to provide improved sustainable care in their respective cities and regions.  Each are at different stages on this road, some just starting out and some well on their way.

There are two common patterns appearing in the early work we have undertaken with Integration Pioneers in this area;

1. the disconnect between the pressing need for change and the maturity and capability of care systems to meet these demands
2. as pioneers, we are each doing our own thing, ploughing our own unique path and potentially encountering the same problems, when actually we all have the same core need – we need to work together

An open, collaborative and joined up approach is needed in the journey towards integrated digital care records. As Integration Pioneers an open approach allows us to act together, tackling the problems and learning once and sharing with all so everyone can benefit.

We have begun the Ripple community effort to support this approach. Key to that community effort, our experience has shown that there are six core components needed to support the delivery of an integrated digital care record system, explained here along two key themes outlined below:

Foundations

Open Requirements – Working with Integration Pioneers, we will identify the common requirements and capabilities needed for an integrated care record, along with their associated benefits. The identified aspects will be shared with all Integration Pioneers to save time and effort and to provide a consistent strategic direction to the community.

Open Governance – we will work with Integration Pioneers to standardise the governance arrangements for the sharing of information across care settings. At the moment this is seen as a real barrier to progress. Working with Integration Pioneers and with the support of NHS England we will provide standard governance templates and guidance to ensure the right arrangements are available and shared across the Pioneers and this emerging community across England.

Open Citizen – we will work with other Integration Pioneers on citizen engagement in sharing care information. It is essential to build trust as well as talking about care records openly, communicating widely and clearly. Working with Integration Pioneers and their respective communities, we will provide the common information and core tools  needed to support engagement in and communication of care record initiatives. In addition to this we will undertaken citizen engagement with the Integration Pioneers around the needs and requirements of a personal health record (citizen access to an integrated care record) and other key healthcare apps as a demonstration of this community effort in action.

Open source platform

Open Viewer – based on the Open Requirements identified by pioneers we will develop and deliver regular enhancements for an open source viewer for the community to use. As ease of use is critical at the front line of care, we will be working towards an Open Source care record viewer that makes the navigation around care records intuitive.

Open Integration –  In between the viewing and the storage aspects of any platform is an important element of bringing information together from the various systems Pioneers currently work with. To meet this need, we will be providing an Open Source Integration Engine which will be connected to those core systems that emerge from the Integration Pioneer analysis delivered by a series of related Open Application Programme Interfaces (Open APIs) to the community.

Open Architecture – Our learning to date has shown that many clinical groups require similar elements of clinical content, although they use them in slightly different ways to meet their own local need.  The current market offers a huge number of applications to accommodate this however these are very difficult to integrate. To move away from this approach and into the 21st century we need a more adaptive, modular, building block approach that allows the community to collaborate. Working with the pioneers we will provide a collaborative forum to develop these key building blocks, in line with international best practice, known as openEHR. With this in mind, we are working towards an open source storage mechanism to support this approach.

 

Why open source?

We believe Open Source and Open Standards are key to innovation and an alternative to traditional ways of purchasing systems from software suppliers.  Open source is owned by the Integration Pioneers and related community, though it can be reused by others across the health and care community.

We see the key features of an open source approach to Healthcare IT as;

• Unconstrained Innovation – Ideas and ambitions can be shared by collaborators who work in different ways, in different organisations, different communities and different skills and experiences, including those not directly employed in healthcare IT
• Transparent credibility – Allowing immediate detailed scrutiny immediately boosts credibility within the community
• Decentralized control – amendments and improvement come from the community, bottom up

Based upon the findings from the initial survey issued we are now formulating programme plan around these six strands, aiming to deliver a release to the community every two months for the first 12 months of the programme. All the deliverables will be made available in the public domain under a recognised open licence.

Now is the opportunity to deliver a real change to care in the 21st century, to remove the barriers to progressing and to give the practitioners the tools they need to deliver more joined up care.

Ripple has begun, the community effort has started.

Hands up if you’re in!

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Integration Pioneers in the 21st Century

There is a widely held view that 21st century care is under pressure, in a state of near-crisis in many places (ref #NHSwinter) where the burden of disease and the limitations of current health and social care systems are becoming ever more apparent.  We know that at the frontline, staff are already working under immense pressure, in unsustainable ways and that change is needed. We must find ways to “work smarter, not harder”.  So we must also find ways to improve the quality, safety, timeliness and cost effectiveness of 21st century care.

Of course,  the change that 21st century care needs will require strong leadership and changes in the way staff work at the coalface, and one question that presents itself is around the role of technology and specifically information technology.

Health and care commentators are, for the most part, all agreed that Information Technology is a key driver for change, while 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 us today.

In exploring this challenge, there is a view that the health and care IT market is not as good as it could be, lacking leadership and a mixed bag of technologies on offer with vendor lock-in a real issue.

Quite often it is still too hard to;

• share citizen and patient information between providers and across city and district boundaries
• adapt care pathways in a way that combines Lean thinking with a flexible information system
• support the audit of care and research which for the most part is done by duplicating effort with cumbersome “back-room” processes.

It would be hard to contest the fact that the current state of the health IT market is holding us all back from the advances that 21st Century health and social care demands.

So is there an alternative path?

Leeds is one of 25 integration pioneers chosen to lead the way on the integration of health and social care through; new ways of working for staff, process redesign and integrated digital care records. Many are at early stages for this work but all with the same focus to improve care and work smarter.

Leeds, as part of an effort to positively disrupt the market, has ploughed its own pioneering path in this field via a mix of open source and open standards to underpin the Leeds PPM+ platform which now powers the Leeds Care Record. Great progress continues to be made on both fronts and positive feedback from both users and citizens alike is emerging, but Leeds believes it would benefit by contributing to and working with a broader community.

Recognising this need for change, to collaborate and to support integration pioneers, Leeds City Council on behalf of the city and with the support of the integration pioneers submitted a successful bid for the second phase of NHS England’s Integrated Digital Care Technology Fund. With the clinical leadership of Dr Tony Shannon, we are now reaching out to work with those 24 other integration pioneers who want to be part of Ripple community which is focussed along 6 open strands:

1. Open Requirements
2. Open Governance
3. Open Citizen
4. Open Viewer
5. Open Integration
6. Open Architecture

We hope that in sharing our challenges, our learning and our efforts, we can kickstart a real health and social care community effort. We are keen to collaborate with all others who recognise this story and share this vision, who choose to take this path together.

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Repost from Tony Shannon’s Frectally speaking blog at frectal.com

 

My first blog of 2015 mentioned a word that is key to all change – culture.

Cultural change is a challenging thing and yet if we examine history, there is a noticeable pattern across all human culture over countless generations, from tribes to chiefdoms to city states to modern nations; the power of a story.

Often, scientific training teaches us that facts come first and therefore ones initial reaction may be to dismiss the power of stories. They can’t be scientific; there may be few specifics, no hard numbers or evidence base involved. I have many years of scientific training yet I realised as important as a scientific discipline is, any medical doctor will be able to recount a “good clinical case” – an individual patient story – that had a very important influence on their medical training and education. Certainly in the early part of my medical career I could not quite reconcile the power of these stories with the factual evidence base that we were trained to focus on and refer to. However as time progressed, I began to appreciate the real power in stories and what is also called “narrative” as an important element of the art and science of fields such as medicine or management. Clearly, there must be something about stories that we need to better understand.

So when I heard of a recent webinar by the Faculty of Medical Leadership and Management on “Stories of Us: …. using public narrative to …. inspire change” I was keen to tune in. The series of webinars run by a medical colleague Dr Claire Marie Thomas (who did a great job) brought an approach to my attention which immediately resonated. Exploring the “Story of Self, Story of Us, Story of Now” it was quickly clear that, as a means of leading change and particularly cultural change, such an approach to stories and narrative offers invaluable help..

The principle, as I understand it, is that all real change starts with one person, who leads and takes on that change. To do this they need to tell their own story, a Story of Self. For that person to work with others to achieve real change, that story of self needs to become a Story of Us, and for that change to begin to gain momentum the story needs to become a Story of Now.

So if you’re sitting comfortably, then I’ll begin … my own short story, my Story of Self.

My own background is from a deeply medical family in Ireland, my great-grandfather on my mother’s side was a doctor, both my grandfathers were doctors, both my parents were doctors, all of my uncles are doctors, my only brother is a doctor. Within that environment I did consider taking other paths, including a look at engineering in my last year in school, yet in the end I also wanted to become a doctor and graduated in 1993 from medical school, University College Dublin.

Once qualified, my first job was in emergency medicine and although I considered a variety of other options I quickly realised that in terms of clinical practice, emergency medicine was the most challenging, diverse, stimulating and rewarding of all clinical environments – nothing else came close to holding my interest and attention and so I chose it as my own medical field.

While doctors are understood as a privileged profession who work hard, most enjoy the push and the pressure that goes with the work, especially as it so readily offers a way to “give back”, in looking after your fellow man, your patients’, as a real means to make the world a better place. Certainly there are few places on the planet quite like an Emergency Department/Emergency Room, where “all of life is here”, literally from cradle to grave, where rich and poor are equal and care is provided based to whoever has the greatest need. The most moving moments in this intense setting.. are not those dramatic moments of the life or limb saved, but those moments after the event when patients and partners or family come together, quietly aware of what could have been, they are special moments to witness and stories not to be forgotten.

Over 20 years practising in Emergency Departments I can explain them as perfect examples of “complex adaptive systems” where you are constantly juggling patients from major resuscitation to minor injuries and everything in between, never sure what will come in next, always working to balance issues of the quality, safety and timeliness of a patients care.

Within that complexity and over time, I noted patterns emerge. Every emergency physician on the planet will know what I mean by the A/B/C approach to resuscitation, a simple yet vital tool to guide a team involved in the complex care of a patient by looking after: A – Airway, B – Breathing, C – Circulation. This process is essential to bring order from the edge of chaos. Another pattern I found involved asking a few key questions with every patient encounter: Was there anything I hadn’t covered? Had they any questions? Were they happy with their care plan?

One key pattern that leapt out from my early days as a doctor was the information intensive nature of work at the frontline. Every shift I have done has reinforced the point that to bring emergency medicine into the 21st century, we need much better information tools to allow staff to work smarter, not harder. My interest in this challenge meant that I slowly and steadily moved into medical leadership roles in Informatics and I have worked between emergency medicine and Informatics for most of the last 10 years.

So over the last ten years I have worked to lead and represent my clinical colleagues in the changes many of us believe are now required across healthcare in this 21st Century. I have listened to their stories whilst aware of my own and it has become increasingly clear to me that we are being hindered from making major progress in this field by the state of the health IT industry. Those who know me, who have heard my story before, will have heard me say that I believe the industry has much to offer and I know there are many good people working in health IT, but that the health IT market is way behind the rest of the software industry and holding us back. Simply put, we need better Health IT.

Today, in 2015… many patients journeys through our health systems are too cumbersome and time consuming. Today in 2015, clinical staff often find it difficult to work effectively with current health IT solutions, it remains hard for disparate clinical groups to deliver integrated patient centred 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.

In recent years I have moved to lead on some of the change required by promoting the role of open source and open standards in work that has underpinned the development of the Leeds Teaching Hospitals PPM+ platform and the related Leeds Care Record. I think that this work has gone well and thankfully in recent times we have seen the market starting to change.

Yet there is much more work to do and it has become increasingly clear that my journey needs to take this mission further and wider, to support the development of an enabling “open platform” that I believe will transform 21st century healthcare via the Ripple Open Source Initiative. So it was with that mission in mind that I completed my last shifts in Leeds ED last weekend, a new journey is in store, a new chapter in the story of self.

Dr. Tony Shannon February 28th 2015

Link to the original post The Story of Self at frectal.com here