Politics of healthcare

…and his Foundation for Integrated Health. An excellent analysis of a recent meeting held at the King’s Fund in London at David Colquhoun’s website .

Independent Sector Treatment Centres (ISTCs) were part of this governments plans for the NHS. GPs were encouraged to use them: this was meant to be the epitome of ”patient choice”. But not only have many contracts been issued on a “take or pay” basis, the cost efficiencies of these units have not been hauled up for scrutiny. Professor Allyson Pollock and Graham Kirkwood obtained data under the Freedom of Information Act in Scotland – no such data has been released elsewhere in the UK – and write in this week’s British Medical Journal about what it means. Poor value for money, and much missing data, they say: “If the same patterns apply in England, up to £927m of the £1.5bn may have been paid to ISTCs for patients who did not receive treatment under the wave one ISTC contracts”.

They conclude that “Contracts should not be renewed and new contracts should not be signed until a proper independent evaluation has been published assessing referrals, actual treatments carried out, and payments made for work done along with value for money analysis. Full contract details and costs must be placed in the public domain for this assessment to take place.”

Surely that can’t be argued with?

Guidelines, guidelines. My desktop, bookshelves and floor are covered with them. Advising on everything from diabetes to incontinence, they come from multiple agencies in increasing sizes and scope.

Some guidelines are excellent; they save doctors from a long trawl through the evidence and give directions in shorthand that everyone can understand. But Baroness Young, chair of England’s new health regulator, the Care Quality Commission, seems to have an unnerving faith in guidelines. Under her aegis, the CQC seems to have general practices in its firing line, and sees adherence to guidelines as a proxy for GP quality. This is alarming.

There are several issues the baroness might not be aware of – she does not have a healthcare background, after all. First, guidelines are a guide, not a formula. If guidelines for a generic population could be applied to everyone, why bother with anything but a computer and automated prescriptions? Individuals have different preferences, concerns, histories and views. The day I start ignoring the variability of people to enforce homogenous guidelines will be, I hope, the day that I lay my stethoscope down and do something else instead.

The remainder of the article can be read here. Please post comments below.

Update: 27th April

I am feeling a bit reassured. Here is an excerpt from Baroness Young’s emailed letter of today:

“I, and the Care Quality Commission agree with NICE and don’t advocate slavish obedience to guidelines but want to assess whether clinicians have considered good, evidence based guidance when making appropriate decisions in the circumstances of the individual, in consultation with patient and/or carer.”

I think I can live with that. Baroness Young  also points out that she has worked in health services management for more than 20 years: but then again, clinical work and decision making is something rather different.

Of particular concern to me about the latest political scandal is the idea that the leader of the Conservative party was to be invited to publish his “full financial and medical records” apparently as a way to reassure the public that he had not had a sexually transmitted disease.

It is difficult to see how a political class offering sympathy to a recently bereaved father a few weeks ago can turn nasty so quickly. It is also rather disappointing to see that STIs are still as wearily ”embarrassing” as ever. But one thing is clear to me - no politician should ever be allowed to make his medical records public. It would only make political stupidity seem reasonable, and in any case, it is no one’s business but the person who the record is about.

Or perhaps not so much a makeover, but a radical shift in how drug research is decided upon, performed and reported. The suggestions come from Sir Iain Chalmers, who is editor of the James Lind Library in Oxford, and Silvio Garattini, director of the Mario Negri Institute for Pharmacological Research in Milan. Writing in the British Medical Journal, they say that their proposals would not only benefit patients but also industry, which is not winning any prizes for popularity at present.

They are:

1) Patients to be involved in shaping the research agenda – in other words, making sure research questions have resonance in real life and real-world situations

2) Legal requirements for research to be published, including trial protocols, by all (mandatory publication of trial data has had legal backing in the US since late 2007; no such protection for patients currently exists in the UK)

3) Independent evaluation of drugs. As the paper says: “The monopoly that the drugs industry has in evaluating its own products, and the secrecy surrounding this process, leads to biased evidence that is currently only rarely questioned by independent studies.”

4) A requirement to demonstrate “added value” for all new drugs – is this drug better than the current best drug treatment, or does it benefit in addition to it, and is it better than non-drug treatments? Too often, trials are done comparing a new treatment to placebo where there is a known intervention which is better than placebo. This means that uncertainty about how to use it best persists.

The authors say that these would help improve public confidence in pharma, would improve returns from investment in R&D, but could also improve efficiency in other ways. For example: “Tim Mant, a director of a major contract research organisation, has acknowledged how frustrating it is to be commissioned to organise a clinical trial that he knows is going up a scientific blind ally because he has been there previously with another company but cannot divulge information that is commercially confidential.”

I hope that people in the pharmaceutical industry take notice: I would genuinely love to write about the improvements that are being made.

The FAST campaign wants you to call 999 if you can answer, about someone you’re with, “yes” to the question “Has their Face fallen on one side?”, “no” to “Can they raise both Arms and keep them there?”, or “yes” to “Is their Speech slurred?” The idea is to get people with strokes to hospital as quickly as possible.

Several readers have been in touch to say that they found the ads on TV frightening and guilt-inducing – had they done enough for a friend or relative who had an evolving stroke? Was it their fault that a stroke progressed as far as it did?

I hope that the effects of these adverts will be investigated, in particular to see if they have any lasting benefit to public health but also to see what the adverse effects are – like what the readers writing to me have experienced.

The Joseph Rowntree Reform Trust is today launching a report, “Database State”, which examines the rationale, security and consequences of 46 public sector databases. It is co-authored by Ross Anderson, professor of security engineering at Cambridge University, who is an outspoken critic of government databases.

The results are startling. Two databases, the NHS Detailed Care Record and the Secondary User Service (which holds summaries of treatment and is supposed to be used for administration and research) are given a “red light” rating. This means, according to the report, that they are “almost certainly illegal under human rights or data protection law and should be scrapped or substantially redesigned. The collection and sharing of sensitive personal data may be disproportionate, or done without our consent, or without a proper legal basis, or there may be other major privacy or operational problems.”

When I spoke to Prof Anderson yesterday, he had much to say on the subject, which he has been researching for almost 15 years. He told me that since about 1995, the Department of Health “has focused on driving control of medical records from doctors to government. It [the Dept of Health] has behaved as though doctors are impeding progress of the evolution of health”.

In Scotland, there has been one main supplier for computerised medical records – the General Practice Administration System for Scotland, or Gpass. Though the system is government sponsored, Ross doesn’t see this as an advantage. He believes that “it has rapidly fossilised. The only interest in upgrading the service has been to put into practice what the civil service has wanted.”

Anderson was adamant that centralised control is “going to be disastrous for medical records”. He gave me an example from Nuffield hospital in Oxford: “[They] put in the new system – and they found that records were suddenly kept on a remote server rather than locally. The server went down in Swindon, and they couldn’t access any records, and therefore couldn’t do any operations.”

But it is not the logistical minutiae of centralised records that concerns Anderson the most. He is more worried about whether they are a good idea in the first place. “In medicine, you have to make sure that the systems are responsive to needs. This is not like a McDonald’s franchise. Medicine is so complex that you can’t [have a "one size fits all" electronic medical record]. Also, when you look at hospital medicine, there are dozens of little specialities, and each wants its own best of breed system.”

Such choice is not going to be possible under the NHS’s new “Connecting for Health” plan. Anderson is also concerned about the plan’s feasibility. “You can build a system for security, or functionality or scale. If you are very good you can maybe do two out of the three. But not three. A GP centre with 10,000 records can cope with risks, maybe there will be a problem with confidentiality once in a career there. At least it is limited and local. But once you get to 50 million records with a large pool of access to them, you can’t realistically expect them to stay confidential”.

There have already been cases where NHS workers have accessed records they had no reason to look at. The few who fail to respect confidentiality will have access to more records, not less.

Connecting for Health says that it will be hugely beneficial to be able to access a person’s full medical record from anywhere in the UK. Yet you hardly ever need a full medical record in order to receive immediate treatment. If you arrive at Accident and Emergency so unwell that you can’t give your basic medical details, it’s unlikely you’d be able to give your name and date of birth either, so access to your computer health record wouldn’t be possible. The ideal may be to use something like medi-alert bracelts, where specific health information — say, about allergies or life-threatening conditions — is available no matter the state of the patient.

As is, the amount of information that the record plans to hold is so enormous that the record ceases to become clinically useful. So much of the data is simply administrative. But it also means that full — or almost full — medical records become accessible to just about anyone working in the NHS (and note, there are 1.3 million people employed in it).

The new records will be opt-out, rather than opt-in, which I think is immoral. There has there been no decent reassurance from the government that standards of confidentiality in medical records will be upheld. I think Anderson’s concerns are justified — and you can start the process of opting out of central systems by making your wishes known to your GP surgery.

The investigation into the Mid Staffordshire NHS Trust makes for harrowing reading. The mortality rate at the hospital was found to be high in patients admitted as an emergency. The first data that showed an increase in the standardised mortality ratio was in 2005. The Healthcare Commission investigation was done during last year, 2008, and is reporting now, 2009. It can be difficult and labour-intensive to interpret statistics correctly. But it is not helped if the length of time it takes to analyse the numbers approaches the life of some health policies.

The report highlights what can happen when fulfilling targets becomes the chosen marker of quality. The target of no more than a “four-hour wait” in A+E led to unsafe practices, such as triage in A+E being done by a receptionist. Similarly, money was saved by getting rid of the hospitals’ clinical staff, as highlighted in the report. The irony is that it’s not difficult to envisage situations where receptionists could be given some training, welcomed as “clinical partners” in “skill mix”, and the system declared innovative and cutting-edge. But these kinds of terms are used to make cost-savings sound palatable: the training for being able to triage is better given via nursing or medical school. Meanwhile, Mid Staffordshire was given Foundation Trust status, and “focused on promoting itself as an organisation, with considerable attention given to marketing and public relations”.

Yet the Government is reluctant to admit that the target culture will not sort out all the NHS’s problems. Nor will shiny PR polish resolve understaffing and overstretching. Should we not just ditch ineffective policies, base healthcare policy on evidence, and move on?

The concept of doctor-rating websites seems to be gathering political momentum; in fact, it’s already a reality. The NHS is being offered this data, apparently to ensure that “patient choice” is offered and “patient experience” is good. I think it’s an unproven and potentially hazardous waste of money. There’s a piece that I wrote for the BMJ here; and you can also read Neil Bacon’s opposite point of view.

Denmark is reported to be paying 40 women compensation after developing breast cancer. The women are being compensated because they were shift workers. It seems that women with a family history of breast cancer are not going to be compensated.

Is this going to be a precedent? How certain can we be that shift work is a carcinogen? There have been concerns for several years, but the problem is that prospective randomised trials to examine potential factors like this are difficult to do. One would need to be sure that it was the shift work, and not factors about the people doing shift work, or the unrelated habits that shift work might lead to, that were the cause. Retrospective studies can at best show an association, rather than causation. The International Agency for Research on Cancer – part of the World Health Organisation – says shift work is “probably” carcinogenic to humans, with “long-term nightworkers” having “a higher risk of breast cancer risk than women who do not work at night. These studies have involved mainly nurses and flight attendants…” 

There are plausible biological explanations – involving melatonin – and animal studies that would fit the thesis. But if we want more definite evidence, that means more research.

Margaret McCartney’s Blog

This blog is no longer updated but it remains open as an archive.

A forum on healthcare policy and professional issues, by Glasgow-based GP and FT Weekend columnist Margaret McCartney.