The enduring question of how to improve care for people with complex health and care needs was the central theme of the 15th International Meeting on the Quality of Health Care jointly held by the Nuffield Trust and Commonwealth Fund.
Participants explored the potential for national policy, funding and regulation to improve health and reduce demand for services for this high cost patient group. They also looked at how changes closer to the front line of clinical practice might affect health and health care consumption: the operational arrangements within and between organisations; tapping into professional motivations in new ways; the role of service users themselves in shaping and improving their care and the potential contribution of technology and information.
Mulling over the rich discussion at the meeting, three things stood out to me – one opportunity, one challenge and one enduring question.
The opportunities of digital technologies and information
First, the opportunity created by digital technologies and patients having access to their medical records was clear. The array of technologies offering self-care advice and self-management support for long term conditions is fast growing, but is also becoming more nuanced. We heard about bluetooth pill bottles that will alert someone’s doctor or care coordination nurse if not opened at the right time. But they can also now be set to alert a family member or other carer, drawing family and community networks more systematically into complex care. Yes, there are still issues and gaps to be addressed. We need to involve end users more in designing and testing technologies and we are still in the foothills regarding decision support aids. Nevertheless, the ability of patients to understand and influence their care is growing.
The power of information is particularly evidenced by Tom Delbanco’s presentation on the US Opennote initiative, which gives five million Americans access to their full medical record. Concerns among physicians that this would increase their workload and create anxiety in patients have proved largely unfounded, and 75% of doctors who participated in an evaluation of Opennote supported ongoing patient access to the full record. Patients reported feeling, among other things, more in control of their care, better prepared for clinical appointments and better able to understand how to take their medications. Research about the impact of Opennote is ongoing, but the early findings hint at a future where full access to medical records could become a core element of coordinated care systems.
The challenge of workforce development for coordinated care
Second, the challenge of developing the health and care workforce to deliver coordinated care in new ways is becoming ever more pressing. With an ageing population and relatively fewer young people to step into health and care roles, the so-called ‘dependency ratio’ is not on our side.
We have to recast the roles of the current workforce while they are working flat out in their day jobs. At the same time, we need to redesign curriculae to prepare the future workforce for new ways of working. And we have to support patients, carers and communities to develop the skills needed to live with and alongside an ageing population with complex physical and mental health needs. Here too, a huge amount of work is underway, so two of the main challenges are to draw together and apply current knowledge of what works and to create time and space for the current workforce to learn new skills and build new inter professional relationships and working practices.
The enduring question we can’t seem to answer
The third thing that stood out was the enduring nature of the issues we were all chewing over. We have understood for years that a small proportion of very complex patients consume a large proportion of resources. We have produced many reports on how to manage these people that spell out the pre-requisites for cost effective, coordinated care: aligned incentives, integrated IT, great leaders, robust data and more.
So why can't we act on this well established body of knowledge?
This question arose several times during the meeting and various answers were mooted. There are too many conflicting interests that stifle policy implementation. The needs of elderly people with complex physical and mental health needs are not ‘sexy’ so it’s hard to whip up public support for change. Other pressures distract us. The search for solutions is overly influenced by political priorities and election cycles.
In searching for answers another theme of the meeting was informative – the issue of what motivates clinicians. How do we ensure that the policy initiatives and financial incentives created by politicians and policy wonks make sense to front line staff? How can we ensure that organisational priorities and interests do not hinder high quality professional practice and instead harness deep, intrinsic professional motivations?
Various methods to motivate clinicians were explored at the meeting. Our efforts to realign the relationships between organisations (through accountable care organisations in the US and new models of care in the NHS) should help to create a receptive context for change in professional practice. Equally important though, will be enabling clinicians to review and improve quality continually, and to adapt their services in response to changes in technology, funding patters and standards. The role of data, time, leadership and peer support were all highlighted as essential to create the kind of adaptive, self-improving teams we need to support complex, high cost patients.
Where next?
So how do we create that elusive golden thread between policy aspiration, organisational redesign and professional practice? It was this recurrent question about why we haven't managed to achieve more when we know so much that has stuck with me.
Will policy makers ever be able to line up the ducks in a way that will achieve transformational change? Will the emerging new models of care programme succeed in engaging front-line professionals in transformational change? Or will it, in the end, be empowered people with information and technology who succeed where policy experts struggle?