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Patients or people? A challenge for European standards

Posted in Articles, and News

“European health services are struggling as demand increases. Much of the increase is because of the growth in demand for health services as people live longer. But does this struggle have to happen? And how can standards help?” asks Malcolm Fisk, PROGRESSIVE Project Coordinator. Two tough questions must be asked.

  1. Have our health services forced us to play the part of dependent ‘patients’, grateful for the expertise of the clinicians as they make our decisions for us instead of us doing more for ourselves?
  2. Has the notion of retirement resulted in a view of older people as of less worth – seen by many younger people as a ‘burden’ on the rest of our societies?

I suggest that the answer to both is ‘yes’, at least in general, terms. For decades, we have been on a slippery slope that has marginalised and degraded older people regardless of their health. This degradation is found in language that talks of older people being ‘over the hill’, as incompetent and unable to learn. It can be linked to the negative image of ageing offered by some birthday cards. And sadly, after being bombarded with such images or being the butt of ageist jokes, that negativity is internalised by some older people who (as a consequence) believe that they have nothing to contribute.
Can you see where I am going with this?
First of all, in response to the first question about ‘patients’ we have to recognise that many of our health services are stuck within a top-down approach. There are two words that epitomise their problem. The first word is ‘patient’ – because of all its associations with dependency. This association can foster an ‘us’ and ‘them’ way of thinking in our health services. The second word is ‘delivery’ – a ‘one-way’ term that is consistently linked to health services. Neither word (at least as they are presently conceived) allows for new ways of thinking that, perhaps, encourage more partnership approaches to health or (‘horror of horrors’!) suggest that people might, except in the most limited of circumstances, take responsibility for the management of their health conditions.
But even though there is a clear need for changes to take place, the defences of the health institutions to challenges are strong. This is even the case for the words used. Clinicians and practitioners have, furthermore, the walls of their professional associations around them – these walls, for some, being perhaps symbolised because their workplaces are often among the most imposing buildings in our towns and cities. We can note, in addition, that these buildings are filled with people wearing uniforms and have some very clever technologies (but just don’t mention words like interoperability or cyber-security!).
Now, however, the battle for the future of healthcare services is beginning to rage. New technologies (that support telehealth services) are penetrating the bastions of clinical dominance. Public and preventative health is beginning to be recognised as needing a more prominent place alongside clinical health. And more older patients (or is that people?), now equipped with greater digital skills, are fighting against their marginalisation and degradation – demanding that they be seen, as is true for people of any age, as leaders and entrepreneurs, managers and workers; and as taking active community roles and (indeed) self-managing in relation to their health needs.
This battle for the future of healthcare is, we can note, even being fought in the European standards forums of CEN (the Comité Européen de Normalisation viz. one of Europe’s main standardisation bodies) where ANEC (the European Consumer Voice on Standardisation) has argued for a change in perspective. The ANEC position on healthcare is instructive (see www.anec.eu). It gives support to standards ‘in the area of healthcare services that relate to the consumer experience, lifestyles, public and preventative health’.
But, at the same time, it makes clear that ‘diagnosis or treatment’ must be a matter for the clinicians. This is a kind of compromise that, it is suggested, sensibly recognises that whilst people should be encouraged to build their knowledge and become better managers of their health, there will always be areas where the  expert ‘input’ of clinicians holds greater sway. But at least we should be able to talk more about partnership approaches… and even develop a new language for healthcare services.
In sum, ANEC argues, CEN should be instrumental in developing standards around the following (paraphrased below).
– The consumer experience of engaging with (and being empowered or not by) healthcare services;
– Information to and training of consumers e.g. around health literacy, participation and/or self-management;
– Support for consumers in their concordance with treatments or therapies; and
– The use of technologies and communications networks by consumers to access health information and related services.
For consumers we can think, of course, about people or, indeed patients! Each item in the list is important in relation to our work within the PROGRESSIVE project. And if the changes happen we can see, for older people, the welcome beginnings of a reversal of the marginalisation and degradation of older people. This means, of course, changing our thinking as well as our words – both within and outside standards. But in the standards committees we can at least start by being more careful about the word ‘patient’; and we can talk much more of healthcare service ‘provision’ rather than ‘delivery’.
Oh, and we must never send any ageist birthday cards!

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