Bernard Merkel: Should patients really be at the centre of healthcare?

bernard_merkelI attended the recent Organization for Economic Co-operation and Development (OECD) policy forum on the Future of Health, “People at the Centre,” with mixed feelings. [1] On the one hand, the conference had an exciting theme and would give me the opportunity to hear about some new ideas and international developments, as well as to catch up with old colleagues and friends. On the other, I noticed that the agenda was going to be dominated by presentations by various American health policy academics—Michael Porter (keynote speech), David Blumenthal (keynote speech), Don Berwick, and Chris Murray.
I don’t want to sound like Michael Gove, but perhaps we have heard too much from American healthcare experts? Look at the messy patchwork of healthcare in the US, their simply enormous healthcare spending, which is not matched by very good figures for the health of their population, and the fact that seven years after The Patient Protection and Affordable Care Act was introduced, millions of Americans still have no reliable access to health services—and the legislation is about to be repealed! So what exactly is it that we think they can tell us about how to do things in Europe?

That being said, the forum did produce some interesting discussions about how healthcare is evolving and how it should evolve. One issue was given particular prominence: patient-centred healthcare and how new technology can help to achieve it.

Nearly everyone nowadays espouses the idea of patient-centred healthcare as a “good thing.” Don Berwick mentioned that his father had been a GP, and he recalls him telling one patient over the phone that he, and nobody else, would decide whether that patient should get penicillin. [2] Who today would dare to be so autocratic, or argue against the desirability of patients being fully involved in their care and treatment, or having services that are designed to meet patients’ wishes and needs? It is also becoming a widespread view that patients should have a say in evaluating the services they receive and how well their needs have been met. Panelist, Petra Wilson, summed up this patient-centric view. Patients, she said, should be co-creators of their healthcare, which means they should be involved in co-design, co-delivery, and co-assessment of health services. [3] In some ways this makes perfect sense. In Western countries people are increasingly interested in their health and exposed every day to vast amounts of information (and misinformation) on health issues. There are many so-called “expert patients” around who may well know as much or more about a particular condition as the health professionals treating them—and all patients will certainly know more than any professional about how their illness feels, and how it is affecting them. I myself as a life-long (mild) asthmatic know when my asthma is properly controlled, when an acute episode is developing, and what works best for me in minimizing its severity.

More generally, there is clearly much that should be done to ensure that patients have easy access to the health services they need where and when they need them (a seven-day NHS, anyone?), and equally to ensure that patients’ personal health information is accurate, up-to-date, and accessible both to the professionals treating them and to the patients, to help them participate fully in their treatment and care.

On the other hand, even with more and more health information available on line and increasing efforts being made to improve health literacy, most patients, are not and would not aspire to be “expert patients.”  And even those who are cannot be expected to know very much about health conditions in general, or how they should be treated for a condition that they have not previously experienced, or what the outcomes are likely to be. I may know quite a lot about my asthma, but when a few years ago I suddenly developed nausea and severe pain in the abdomen, I didn’t have a clue what was happening to me and was more than happy to submit to a series of tests, accept the doctor’s diagnosis, and take the medicine prescribed.

So when I hear this kind of discussion between academics and articulate patient advocates in a room full of well-off, well-educated people with considerable knowledge of health and healthcare, I can’t help but feel that this is all a very long way from the more prosaic reality of the less advantaged and more typical patients who turn up every day to GP’s surgeries and A&E departments looking for expert help.

Bernard Merkel retired last year from the European Commission, where he played a central role in the development of the EU’s actions in health, including the public health programmes; the overall health strategy; and, more recently, the growing work on health systems. Before he joined the EU, he was a civil servant in the Department of Health for many years, including a spell as a ministerial private secretary.

[1] The Organisation for Economic Co-operation and Development (OECD) is an association of 35 developed countries which carries out analytic and policy work in a range of areas, including health.  The Policy Forum on the Future of Health took place on the day before a meeting off OECD Health Ministers.

[2] Ex head of the US agency, the Centers for Medicare and Medicaid Services (CMS), now head of the  Institute for Healthcare Improvement in Cambridge Massachusetts

[3] Digital Health & Care Institute, Scotland