It’s obvious to me that all scientific research should be available free to everybody everywhere, the polypill to prevent heart attacks and strokes should be offered to all those over 55, and patients not health institutions should control their records. Why don’t these obvious things happen?
The core arguments for making all research free are that most of it is funded with public money and that ideas unlike physical objects can be shared infinitely, increasing their value and the chance they can be exploited. Something like 20% of scientific studies are now available free to everybody, but most are not. Vested interest is the main barrier: the profits of many organisations, many of them scientific societies ironically, and the jobs of many individuals depend on the present limited access model. As Maynard Keynes observed, it’s impossible to convince somebody of the value of an innovation if his or her job depends on not being convinced.
But the other important barrier is the way that universities have outsourced what surely should be their core function of evaluating the quality of academics. They have outsourced it to publishers and their journals. Your value as an academic is measured primarily by where you publish—despite the lottery and failings of peer review and “top journals” being more likely than lesser journals to publish studies that turn out to be plain wrong.
All research will be available for free eventually, but I may be dead before it happens.
At the moment we are doing a poor job of preventing heart attacks and strokes. Most people at high risk have not been diagnosed, and if they have been they are unlikely to be adequately treated. Furthermore, as Geoffrey Rose explained years ago, most people who have heart attacks and strokes are at low risk—simply because there are many more of them, the prevention paradox. We could probably prevent half to three quarters of heart attacks and strokes if everybody over 55 took a polypill once a day containing antihypertensives and a statin. Such polypills are available in some countries, and if mass produced could probably be sold for not much more than a dollar a month.
So why doesn’t it happen? Here the main block is not vested interest, but more a deep conservatism. Such conservatism can be invaluable in preventing the rapid spread of crazy ideas, although it doesn’t always work: I’m thinking of bone marrow transplantation in women with metastatic breast cancer. But conservatism can be overdone, and it is in the case of the polypill.
Moral righteousness is another barrier. It’s probably true that if everybody avoided tobacco, limited alcohol consumption, ate a healthy diet, exercised adequately, and stayed thin that they’d be unlikely to have a heart attack or stroke. But it simply isn’t going to happen, particularly among those living in difficult circumstances, like poverty. At the moment the world is fat and getting fatter. It’s going to be some time before that trend reverses and people become thin again.
The main practical problem seems to be regulatory authorities. They don’t know how to licence a drug with four or five components except to think that if bioequivalence could be shown it might be used in a patient already prescribed those drugs in those exact doses. Pharmaceutical companies might break through the regulatory barrier, but they are not keen on a cheap polypill that might displace their much more expensive drugs. Even more worrying for them, the polypill to prevent heart attacks and stroke might pave the way for other polypills. Indeed, combining drugs off patent with different mechanisms for treating the same condition might well prove a much more cost effective model than spending billions developing new single drugs that have small effects on highly selected groups of patients.
Patients controlling their own records seems to me the most obvious of all three of these obvious things. (I must declare right away that I am the chair of a company, Patients Know Best, that is promoting patient controlled records; I’m not paid, but I have equity.) Why should a series of institutions have records of me when I don’t have them myself? The simple answer is, I suppose, that we have until recently lived in a world where doctors knew best and my healthcare was the responsibility not of me but of a series of experts working in different institutions. That world began to die some time ago, and now the call is not only for joint decision making with patients but also for integrated care, bringing together the many health and social care professionals and organisations that care for today’s standard patient, who has multiple long term conditions and social care needs.
Patients controlling their own records is ultimately essential both for shared decision making and integrating care as well as encouraging and supporting self care, which is the main determinant of doing well with long term conditions. So why doesn’t it happen?
Lack of imagination might be the biggest problem. Health professionals and their organisations don’t object much when presented with the idea, but they just haven’t though about it—even though for me it’s obvious. Then who is going to make it happen? The doctors are too busy. Other health professionals don’t have the clout, and patients have even less. Managers have other priorities, and after the disaster of Connecting for Health are reluctant to take the lead. Some people are happy to be second, but few are keen to be first.
I shouldn’t probably be surprised that the obvious takes so long to happen because we know that in health systems cost saving innovations with strong evidence to support them take around 18 years to be part of routine care. And all three of my obvious things, although simple to grasp, have a radical side to them. Which of them, I wonder, will become the norm first? I think I’d bet on patient controlled records.
Conflict of interest. RS has long been an enthusiast for open access to research. He was on the board of the Public Library of Science for eight years. He was not paid. He’s also a longstanding enthusiast for the polypill, has been in a trial of the polypill, and takes it every day. He has no financial interest except that he has to pay for his polypill. As is made clear in the blog, he is the chair of Patients Know Best, has not been paid, but has equity in the company. Most start ups fail, but it’s becoming increasingly clear that PKB is succeeding. It could even be that PKB will make RS rich—or, perhaps more accurately, richer. As his outgoings (books, wine, polypill, concerts, the theatre) are low, the result, as illustrated by Mr Micawber, is happiness.
Richard Smith was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.