Chapter 6 - Realising Knowledge For a Realistic Era
How do we become Realistic Innovators in
our approach to knowledge?
In 1998 Dr Vincent Fellitti published The Adverse Childhood Experiences ( ACE) Study in the American Journal of Preventive Medicine.  In it, he examined the relationship of childhood abuse and household dysfunction to many common causes of death in adults, surveying 17,000 middle class Americans to elicit their exposure to eight categories of adverse childhood experience and comparing this against their adult health status, on average fifty years later. The findings were staggering, with a “strong graded relationship” between these experiences and multiple risk factors for health in later life.
As more was understood about the impact of this exposure and the cognitive and physiological effect that it has on children, a compelling rationale for a fresh approach to practice began to form across health, education and criminal justice services. But this rationale challenged both conventional thinking and many of the policies that had been developed to try to help those experiencing addiction; for example, that the root cause of addictions lay within a person’s experience rather than solely within the biological structure of the addictive substance. It would take years for this concept to break through and gain wider acceptance.
Chronic stress as a result of adverse experience in childhood changes how children’s brains develop and can also alter the development of their hormonal, nervous and immunological systems. These physiological changes increase the likelihood of ill health and multimorbidity by increasing an individual’s allostatic load, resulting in premature wear and tear on organs through chronic exposure to a heightened neural and neuro-endocrine response.  However, it is vitally important to understand that this path is not inevitable. More recently, research has demonstrated encouraging evidence that developing resilience, particularly through stable supportive relationships, has a beneficial effect in both reducing this level of health risk and raising educational attainment.
Despite these studies and others that followed, the universal adoption of trauma-informed practice across specialties with interventions aimed at developing resilience in children and young people has been slow. The first Realistic Medicine report spoke about the challenge posed by the knowledge translation gap and this is a good example of where embedding evidence into common clinical practice takes longer than we would wish to be the case. The Scottish Government’s Programme for Government 2017-18  contains a commitment across policy areas to tackle adverse childhood experiences and we welcome this as an indication that this knowledge translation gap is at last being bridged.
But what if we were to take a fresh approach to research and to the evidence that will support Realistic Medicine? Perhaps it is time for us to pause and reflect upon our current approaches if we are to achieve our stated ambition by 2025. Maybe this is an opportunity to try a new way to accelerate the development and presentation of guidance that ultimately will assist in spreading knowledge to professionals and the public alike in a Realistic era. In Realising Realistic Medicine, the principles of connection, collaboration, communication and culture were established as key tools for the successful implementation of Realistic Medicine but there is a clear need to develop robust evidence for how best to put these principles into successful practice and to evaluate their impact.
As far back as 1996, Sackett warned us about what evidence based medicine was, and what it wasn’t  . He cautioned that evidence based medicine should not become “cookbook” medicine. Instead he defined it as the successful integration of the triad of clinically relevant research, individual clinical expertise gained through clinical experience and practice and perhaps most importantly, “the more thoughtful identification and compassionate use of individual patient’s predicaments, rights and preferences” in the decisions that relate to their care. In a Realistic approach to evidence based medicine, these predicaments that Sackett refers to might be particularly relevant. We each encounter a variety of socio-economic factors or environmental considerations in those that we encounter that can sometimes make it difficult to extrapolate some clinically relevant research to their experience of the world. Acknowledging this and developing approaches to try to address this lies at the heart of the art of medicine.
Figure 8. Evidence Based Practice ( after Sackett et al )
Sackett goes on to say that evidence based medicine should not be confined to randomised trials and meta-analyses, but should involve tracking down the best external evidence with which to answer our increasingly complex clinical questions. This is an approach that is reflected by the changing methodology to recent guidelines produced by the Scottish Intercollegiate Guidelines Network.
Professor John Kinsella is Chair of the Scottish Intercollegiate Guidelines Network ( SIGN) that has been developing evidence based guidelines for the NHS in Scotland since 1993. It has an enviable reputation within the Guidelines International Network and continues to evolve its approach to its publications.
Professor Kinsella describes how the use of this evidence is evolving in guidelines. He says, “The traditional randomised control trial has been designed exactly to show that a treatment is better than a placebo, or that one treatment is better than another one. More recently there have been a lot more studies to show that they’re equivalent – non-inferiority studies. That’s better because you’re balancing the advantages of one against the other. The alternative might be easier, less burdensome, faster, fewer side effects or better value.”
“We used to have a gradation of recommendation, but that only told you how strong the evidence was. It didn’t tell you the clinical importance of it. Now you get strong or weak or conditional recommendations. A strong recommendation simply means that the majority of patients would choose and are likely to benefit from “this”. It doesn’t mean that everyone should have it. There might be many reasons why a patient might not choose it – co-morbidities, values or preferences to name a few.”
Over the last two years, during the conversations that we have had with clinicians across the country, we have often heard concern expressed about “not following a guideline” and the medico-legal implications of this. Professor Kinsella has a view on this. He says, “The whole premise is that it’s ok not to follow the guideline provided the reasons for not doing it are well documented. So things that for the majority of people wouldn’t be advised for some people it might be the case.”
Of course, as well as making these recommendations about what treatments should be used, there is also the opportunity to give advice about those that should not normally be used. Professor Kinsella sees this as a particular strength and says “I’ve always felt that the guidelines’ real strength is not to reinforce the evidence that many people already knew, because clinicians are generally well informed, but to stop people doing things that are harmful or do not add value to the majority of patients. It’s the opportunity to address outlying areas of practice that cannot or do not benefit either the individual or people in general.”
He recalls a particular area where this slow adoption of evidence and guidance began to create challenges in his own field of practice, critical care. “Years ago, recommendations had been published that there should be advanced discussion with people with advanced respiratory disease about how they should be managed in the longer term. For a long time before that, we were intubating and ventilating them when they were in crisis, and people struggled with this because the perception was that it was futile, but it felt like we had limited options. Though it’s taken time, more people are now managed at home or in assessment units but it takes a long time to filter through.” He goes on, “People become more confident to have these difficult conversations but they need to happen in advance. It’s not possible to get a balanced view in a time critical situation.”
Of course, this also relies on these messages being appropriately and effectively communicated between all those involved in these decisions and who may contribute to care. Crucially, this must include those to which the information relates and must prompt and support an approach responsive to changes in people’s conditions, wishes and identified needs.
The Key Information Summary has been part of a succession of tools, including the Electronic Care Summary and Palliative Care Summary, that have attempted to provide this chain of knowledge. Though undoubtedly it has helped, it is time to reflect upon how we can improve this further in the future. A recent workshop sought to develop a shared understanding of the issues here and will help inform planning to produce an enabling digital environment, with data standards that allow people a “form view” of information appropriate for their role and task.
The Recommended Summary Plan for Emergency Care and Treatment ( ReSPECT) process is a UK initiative led by the Resuscitation Council UK ( RC(UK)). ReSPECT has evolved as a process to support advance and anticipatory care planning ( ACP) by prompting realistic shared decision making to guide a person’s clinical care in a future emergency where they do not have capacity to make or express choices.
A central aim of ReSPECT is to be truly person-centred and to move away from a binary decision of “Do Not Attempt Cardio-Pulmonary Resuscitation” or “for full escalation” to better reflect people’s more complex and evolving situations and values. ReSPECT is a process aimed at prompting and supporting the conversations to establish a shared understanding of what really matters to the individual and to explore which realistic care and treatment choices can support those values in a crisis situation. The form endeavours to communicate that shared understanding in a structured and sharable form in order to ensure the patient’s wishes and values are respected at times when they are unable to express them and to enable the staff team to stay loyal to them. It should remain with the patient across all care settings and be immediately recognisable and accessible by all who would benefit from that knowledge to provide the right care for that patient in an emergency situation.
Work on the ReSPECT process and its digitisation, as it matures, will be built on, so that conversations about what matters to people can be recorded and shared in ways which shape the care of people right along the whole pathway of care; from self-management, to palliative and end of life care, via self-directed support and dementia care. Scotland is leading this work with the Professional Records and Standards Body ( PRSB), adopting an approach that will see the development of a data standard for recording ReSPECT information in a shareable format. This work will reduce the effort for future application developers in understanding how best to structure and code ReSPECT data and help maximise the re-use and responsive updating of this standardised information between IT systems and to also support other related processes.
One simple step that may assist a more timely translation of evidence into knowledge and practice is to create conditions where academics, NHS staff and policy-makers work more closely together. In a recent editorial in the British Journal of General Practice, Guthrie et al  suggest that there is important “middle ground” research that sits between the tightly controlled studies that lie within the remit of national funding bodies and the service evaluations that too often examine impact only after the roll-out of initiatives.
Professor Stewart Mercer is an advocate for this approach who has published extensively on multimorbidity and compassionate approaches to care. He explains why he feels this methodology is important to Realistic Medicine, “Middle-ground research offers an attractive approach by providing “realistic research” over a much shorter time span than traditional research, the findings of which would then be more rapidly implemented by NHS partners who were deeply involved from the outset. The middle-ground approach that we are proposing to inform Scotland’s healthcare journey could also lead to and benefit from meaningful collaboration across the UK and internationally.”
Figure 9. Strengths and weaknesses in innovation development and evaluation 
|Frontline Clinicians and Managers||Academics|
|Creating Interventions and new models of care||Normal business for NHS innovators. Strong on feasibility but often does not draw on strongest existing theory and evidence.||Normal business for health services researchers. Strongly based on existing theory and evidence but often inadequate attention paid to feasibility.|
|Evaluating interventions and new models of care||Often not focused on from the start, and evaluations done tend to use weaker designs that have significant risks of bias.||Emphasise pre-planned, “as strong as possible” evaluation design to minimise bias.|
|Translating new ideas into practice and ensuring spread and sustainability||The experts in real world implementation but often do not draw on existing theory and evidence.||Often under-estimate the complexity of real-world implementation and many perceive translation to be someone else’s responsibility.|
|Evaluating widespread implementation||Often not focused on from the start, and evaluations done tend to use weaker designs that have significant risk of bias.||Have relevant methodological expertise but not commonly engaged in real-world evaluation, although now partly incentivised by Research Excellence Framework requirements to demonstrate impact.|
A good example of this has been the work of the Scottish School of Primary Care and NHS Health Scotland in creating an evidence collaborative to support the transformation of Primary Care in Scotland. This is not just about evaluating impact and implementation of NHS-led innovation, but collaboration to develop complex interventions and new models of care that Professor Mercer says can be “evidence based, theory informed and feasible”.
He says, “Achieving the aims of Realistic Medicine will require robust evidence not only on what works, but also for whom does it work, and under what circumstances. This will be needed to know what interventions can be implemented and scaled up, and their likely effectiveness and cost effectiveness.”
This is a methodology that will be adopted as we embark on a research and evaluation programme that will accompany Realistic Medicine. To do this, we intend to embed researchers within the Realistic Medicine policy team to lead this programme along three tracks, examining the clinical, social and economic impact of Realistic Medicine as it progresses and developing further evidence to inform future approaches.
We must ensure that this evidence and guidance is readily available for professionals and public alike, using innovative approaches that maintain the integrity of the therapeutic consultation but with the aim of developing greater confidence in self-management and shared decision making. A Realistic approach to knowledge might combine three sources of information for effective shared decision making:
- Contextual: social factors, environmental support
- Personal: life experience, What Matters
- Clinical: external evidence, clinical experience
Discovery projects are underway as part of the national roadmap to learn how decision support can contribute to the goals of Realistic Medicine. This early focus has been on shared decision making and reducing unwarranted variation and even at this stage their contribution is encouraging.
For example, in 5,692 cases of people living with diabetes and co-morbidities in NHS Tayside and NHS Lothian, and whose clinicians used decision support software embedded in the SCI-Diabetes patient record system, people were:
- 4-9 times more likely as case controls to have essential checks carried out to prevent complications (foot, vision, cardiovascular and kidney disease)
- Significantly more likely to have effective blood glucose control and reduction in acute kidney injury than case controls (p=0.003).
The antimicrobial prescribing decision support application, launched in late 2016, now receives 1760 sessions per month whilst shared decision making tools are being tested to support the management of chronic pain, medicines review for people with multiple conditions and implementation of new pathways for gastro-intestinal conditions. These tools will be embedded in primary care clinical systems and also be available as websites and downloadable mobile applications.
“These tools to support shared decision making are exactly what I think we need, locally and nationally, particularly for complex conditions like chronic pain.”
Prof Blair Smith, National Clinical Lead for
It is critical that this knowledge is accessible for the public too. This, after all, lies at the heart of shared decision making and must be made available in a way that recognises the spectrum of health literacy levels. Indeed, it is fundamental to the House of Care model for chronic disease management that has been highlighted in previous reports and is now being introduced across the country. For example, NHS Lanarkshire libraries are providing training for health and social care staff in health literacy. They are partnering with public libraries and voluntary organisations so that healthcare staff can signpost patients to relevant sources of information and support.
Library and Information Services across the NHS, local authorities, health and care practitioners and the voluntary sector have a key role to play in achieving a joined-up, coherent approach to making use of many types of knowledge in our interactions with people. More people visit public libraries each year in Scotland than visit cinemas and Premiership football matches combined and as the services that these libraries offer evolve, it is vital that we work together to ensure understandable health information is available within this trusted environment.
Public libraries are building their role as community access points for quality assured health information. NHS library services source evidence to support patient-led decisions and support practitioners to develop their skills in helping service users to use information. The Scottish Library and Information Council is funding a project led by The ALLIANCE in collaboration with public libraries, the Scottish Government eHealth team, and NHS libraries, to deliver a national programme of training in health literacy and self-management for public library staff across Scotland. During Self-Management Week, this collaboration delivered a promotional campaign and the toolkit Going in the Right Direction  about using library and information services for self-management and improving health literacy.
In his 2003 paper “Disseminating Innovations in Health Care”, Berwick stated that failing to use available science is costly and harmful; it leads to overuse of unhelpful care, underuse of effective care, and errors in execution.  It is ironic that 15 years later we have failed to fully capitalise on the recommendations that he made within that paper on how to accelerate the diffusion of innovations within organisations. Across Scotland, there is much excellent work that will assist us to meet our shared aim of Practising Realistic Medicine; ensuring that the evidence and knowledge gained from this becomes embedded in our practice is something that we hope we will all commit to. Across the country, networks of people are coming together to talk, plan and test new ways of working to help us realise Realistic Medicine. As you do this, please commit to ensuring that others may benefit from the knowledge you develop so that we may all learn and improve together.
Figure 10. Berwick’s Seven Rules for Disseminating Innovation in Healthcare
Berwick’s Seven Rules for Disseminating Innovation in Healthcare
Find Sound Innovations
Find and Support Innovators
Invest in Early Adopters
Make Early Adopter Activity Observable
Trust and Enable Reinvention
Create Slack for Change
Lead by Example
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