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Polderen



This was produced as a blog for the Clinical Informatics and Technology forum in Cardiff & vale UHB in 2019 while I was CCIO. I attended an International Conosortium for Health Outcomes Measurement (ICHOM) as part of my role in developing the National Clinical Framework.


Reflections on the common interest and the threat of inundation


I spent a couple of days this week in Rotterdam at the conference of the International Consortium of Health Outcomes Monitoring (ICHOM). At the beginning, I was introduced to the concept of polderen. The Dutch healthcare system has embraced the concept of Value Based Healthcare (VBHC), and patient-reported outcomes measures (PROMS) is at its heart. But it also involves working across organisations to share data, engaging with healthcare industry and tech partners, and government policies. In other words it involves bringing people with apparently different agendas and interests together to work co-operatively. The speaker introducing the concept was seeking to find reasons why the Netherlands might be leading internationally in VBHC. The Netherlands is a country which has substantial areas below sea level – reclaimed from the sea centuries ago. It relies on systems of dykes and pumps to prevent flooding, and thus the populations living there have a clear common interest in making sure this network is maintained – no matter their background or other differences. His contention, that hundreds of years of this reality has had a permanent effect on the Dutch psyche, certainly seems plausible. The sense of shared endeavour is similar to the oft-cited anecdote about the NASA janitor whose self-reported job description is ‘putting men on the moon’. The polderen metaphor works better for me in the VBHC setting, however, as it’s as much about self-preservation as it is about reaching a goal – the exponential increase in healthcare expense; demand is the potential flood.


Wales has started on its own journey towards VBHC, and already has a national lead (Professor Sally Lewis), who is bringing together colleagues from an increasingly broad base, and promoting and supporting the development and introduction of PROMS. It is not alone – the Organisation for Economic Co-operation and Development (OECD) has co-ordinated Ministerial level engagement to VHBC across over 30 nations (and in health-terms Wales is its own nation). The OECD speaker on more than one occasion drew attention to Wales as being towards the forefront in this process – to the extent that VBHC now forms part of the undergraduate curriculum at Swansea University. As part of that process, a delegation from Wales was present who are working on VBHC projects. In partnership with the NHS Wales Finance Academy, these are pairs of clinicians and finance staff– not traditional travelling companions, certainly in my experience. But the shared interest is there in spades. Also present were senior representatives from the NHS Wales Informatics Service (NWIS).


VBHC as a concept is around 10-15 years old. It is a simple concept: Value equals outcomes divided by costs. The outcomes is the bit we are focussed on in the Digital sphere – and it holds the key. It is the existing abilities of what Digital can do that is the step-change – and the possibilities for the future are even more exciting.



The Digital Bit


Measuring patient reported outcomes is the central feature. It is not simply technical outcomes that matter (although they are important) – it is the difference an intervention or treatment makes to a patient’s life. By measuring this, at an individual level we recognise what matters to patients in a much more meaningful way, and at a system level, we begin to learn what works well…and what doesn’t. There were many lessons in the presentations and posters of how measuring PROMS has led to the system concentrating on things that matter to patients, and moving away from things that don’t matter. At the system level, once enough organisations are collecting data in the same way, benchmarking can be done, and this can then be used to identify best-practice and drive improvement. This is already happening using some traditional outcome measures where they have been aggregated into large national disease registries, but not for PROMS - yet.


Recording PROMS requires patients to complete questionnaires answering a range of questions about their general health, and questions relevant to their particular condition. ICHOM has created internationally collaborative ‘standard sets’ for a range of conditions – and they continue to grow. This approach has been hampered in the past because it relied on paper – and this is where digital is changing the game. By making the questions available on a mobile device, it is easy for patients to use. The information supplied can be used ‘live’ in face to face consultations. The patients complete their questions in the waiting room, or on the way to the clinic, and the clinician sees the results in a visually meaningful way. Or maybe this is all done at home by the patient, and the clinician sees the results and agrees with the patient that ‘everything is fine, no need to come to clinic’. The use of applications on mobile devices designed with user-need foremost has been very important – and response rates of 80% are typical.


The key themes emerging at the conference were the ones that CIMaT attendees will recognise


  • implementation is important and requires resource;

  • once introduced, the PROMS information can start to change the workflows – and support for this is needed.

  • culture change that inevitably starts to happen needs to be maintained – the early adopters and second wave is fairly easy, but ‘the chasm’ still needs to be crossed – this is where a few countries are now getting to

  • Patient involvement – meaningful patient involvement – is also a key feature at every stage in the design, implementation and operating phases of these projects. That is a topic I’ll return to as it’s so important, and something I’m trying to look at wearing another hat.


Some countries (including The Netherlands) are now beginning to come up against the obstacle of data flow barriers between organisations. Indeed, it is a persistent feature of presentations that they tend to describe the progress made in a particular health care organisation, but not across a whole national system. There was a very important presentation on IT system architecture and Information Governance in this regard – but unfortunately my notes tail off with the sentence ‘This looks important and insightful, but I’ve lost the thread here, and I need someone to translate for me’. I might come back to it in a future post.


The 'So What?' Bit


In Wales, we already share information across organisational boundaries, (although we have work to do in sharing across the border with England). The use of PROMS has also become more common with the guidance of the National PROMS team, and the development of the National PROMS platform by NWIS, and the engagement with third party providers of PROMS applications like Patient Knows Best and DrDoctor – and there are many more emerging. If the National Data Resource is developed as anticipated in the next 2 years, I think Wales will become a destination for those running healthcare systems elsewhere, as it could truly enable VBHC to become the defining feature of the system here. But I’m an optimist, and I do get excited easily. Even when I calm down though, I see the potential for clinical teams in CAV (and other health boards – I’m a remainer!) to introduce PROMS now. I have the contacts.


Next week, I plan to write about some of the specific examples I heard about at the ICHOM Conference: how national data resources allowed disinvestment in an expensive widespread treatment that was of no benefit, how PROMS are re-framing the way clinicians think about their patient’s needs and what ‘success’ actually is, and to highlight some examples in Wales where PROMS are in use and are beginning to inform service re-design.


If anyone wants to find out more – you know where to find me.




Finally, a couple of admissions.

First: you may have found this blog a bit system-heavy and tech-lite. That is inevitable – my interest in digital is not in tech for its own sake, it is in its ability to transform services. I generally use the shiny digital label as a Trojan Horse to bring clinicians into the service transformation field.

Secondly, I’m struggling with my definition of the term clinician. I’d always considered it broad, and meaning anyone involved in patient-facing interactions. But it no longer suffices. Having spent time with colleagues from finance, I see their interests and motivations are actually the same as mine, so they need to be involved in the conversations we have in CIMaT.

Polderen...



 
 
 

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