Thursday, 31 October 2013

Paper now open access

Just to let you know, my paper on the contributions of carers and staff in service design is now available as open access:

Thanks to the CLAHRC for making this happen :)

Tuesday, 8 October 2013

The final reckoning: how much should end of life care cost?

This is a repost from a blog article I was invited to write for the Gates Scholars Blog


The big innovation in the 19th and 20th century was the acknowledgement that health is a systemic issue. If people do not seek medical advice for small problems due to economic reasons, these small problems can become big problems and cause further poverty. This realisation led, for example, to the establishment of the NHS in 1948.

Nowadays we are facing the sustainability challenge: will we be able to keep affording the systems set up as a result? One problem is the ageing populations of many developed nations – it is estimated that in the US on average between 25% and 56% of healthcare spending occurs in the final 12 months of life. A second problem is, ironically, continuing progress in the medical sciences which allows us to treat more diseases and prolong lives. But the associated costs are spiralling out of control. Also, scientific progress creates illusions regarding what it possible and feasible. Combined with the lack of a culture that discusses death as a part of life many doctors find themselves under pressure to do whatever is possible, regardless of quality of life – or costs.

The latter point – placing a monetary value on life – might sit very uncomfortably with some readers. However, when we look at health as a systemic issue the question of money is bound to arise in one form or another. Every dollar or pound can only be spent once. A cancer treatment that prolongs life for a couple of months (at often a pretty terrible quality of life) can cost £40,000, which could also pay the annual salary of a palliative nurse. In the United Kingdom the discussion is open. The National Institute for Clinical Excellence (NICE) makes decisions about which treatments are covered by the National Health Service (NHS) based on the calculation of quality-adjusted life years. But systems which do not have this transparency, such as the fragmented German system of different public and private payers and various associations representing healthcare providers, also have to make decisions regarding which treatments are considered effective and value for money in order to contain costs and kept health insurance affordable.

Another issue which affects the sustainability of our healthcare systems is the human side. Organisational structures are filled by people, both staff and patients. As the people in them change structures have to adapt and vice versa. A system in which structures and people are out of synch will not work in the long run. A popular contemporary line of argument is that because healthcare is fundamentally an interaction between people, it is complex and non deterministic. Other arguments for this complexity model are based on the enormous variety of issues faced by healthcare providers, although this is strictly speaking not a characteristic of complexity but rather indicates a complicated problem. Semantics aside, the focus on complexity are as one-sided as the earlier models of rational technocratic top-down blueprints which the complexity model seeks to supersede. It is not a question of one or the other, but rather ‘horses for courses’.

A climbing rose is a good simile for how organisational success depends on interactions between staff and structures. A climbing rose (staff) requires a scaffold (structures) to reach its full potential. The shape of the scaffold will have a key influence on the shape of the final rose bush, but it is not possible to completely determine the shape of the bush from the shape of the scaffold and sometimes it becomes necessary to change the shape of the scaffold. On the other hand, the best scaffold in the world is worthless without the right, good, healthy plants.

I think the challenges we face are so big that a more open discussion regarding end of life care will be inevitable. On the other hand, a new direction in the policy debate that seeks to reconcile technocratic approaches to structures with insights about the complexity of human interaction should help to ensure a system that can adapt to changing environments and new challenges.

Tuesday, 1 October 2013

Paper: What can carers contribute to service design?

My paper is finally out - I submitted it last year in June and it was published as early view this July. I carried out a study with three groups of stakeholders and assessed to which degree they agree on priorities for service design.

Of course I am biased, but I think this is really important and interesting research as it is the first time that we can quantify the contribution of different stakeholder groups which historically had different amount of influence on the service design process. For example, experts and policy makers usually have a lot of influence, carers (and patients, but unfortunatly I was not able to include them) usually have much less. One of the reason why they have so much less influence is because those with the power over the process doubt how useful their contribution can be (I guess you can call this a certain degree of professional arrogance) and this is exactly where my work chimes in. I can actually show that they can contribute new idea which established stakeholders recognize as valuable.

The article is available as open access:

Exploring the boundary of a specialist service for adults with intellectual disabilities using a Delphi study: a quantification of stakeholder participation

Eva-Maria Hempe, Cecily Morrison, Anthony Holland


There are arguments that a specialist service for adults with intellectual disabilities is needed to address the health inequalities that this group experiences. The boundary of such a specialist service however is unclear, and definition is difficult, given the varying experiences of the multiple stakeholder groups.
The study reported here quantitatively investigates divergence in stakeholders’ views of what constitutes a good specialist service for people with intellectual disabilities. It is the first step of a larger project that aims to investigate the purpose, function and design of such a specialist service. The results are intended to support policy and service development.
Study design
A Delphi study was carried out to elicit the requirements of this new specialist service from stakeholder groups. It consisted of three panels (carers, frontline health professionals, researchers and policymakers) and had three rounds. The quantification of stakeholder participation covers the number of unique ideas per panel, the value of these ideas as determined by the other panels and the level of agreement within and between panels.
There is some overlap of ideas about of what should constitute this specialist service, but both carers and frontline health professionals contributed unique ideas. Many of these were valued by the researchers and policymakers. Interestingly, carers generated more ideas regarding how to deliver services than what services to deliver. Regarding whether ideas are considered appropriate, the variation both within and between groups is small. On the other hand, the feasibility of solutions is much more contested, with large variations among carers.
This study provides a quantified representation of the diversity of ideas among stakeholder groups regarding where the boundary of a specialist service for adults with learning disabilities should sit. The results can be used as a starting point for the design process. The study also offers one way to measure the impact of participation for those interested in participation as a mechanism for service improvement.