Natalie Lambert on respecting research

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Most applied health and social sciences research is rightly directed at identifying the most cost-effective interventions for specific diseases and risks.

When researchers are awarded a grant to conduct such a study, they are charged with responsible, accurate and representative dissemination of their findings. But how far should that responsibility extend? What really happens to those reports and papers?

Henderson Hospital is a unique and internationally renowned "tier 4" therapeutic community for people from England and Wales with severe personality disorder. It offers in-hospital interventions with outreach follow-up to those who have tried, and been failed by, other talking therapies and by medications.

The difficulties in evaluating therapeutic communities are well documented, and Henderson Hospital is no exception. In a randomised controlled trial, patients are randomly allocated to the treatment under study or to a control group. But as Henderson admission is dependent on a community vote, this kind of random allocation would be difficult, and no such study has yet been conducted.

Cost benefits

To get round this problem, Henderson researchers have conducted two types of evaluation. They have compared the degree of standard psychiatric services used by patients before and after treatment at the Henderson. They have also compared people who were denied funding for the Henderson with those who were admitted.

The findings show that the reduction in service use by those attending the Henderson is such that its cost is recouped within three years. On the back of this evidence, two further therapeutic communities were commissioned for England and Wales in 1996.

Eighteen months ago, the Henderson's waiting list was six months, such was its popularity. But this month, the hospital temporarily closed its doors due to low numbers, pending a public consultation that may result in permanent closure.

So what has changed? Has a research study shown that the Henderson is no better than ordinary care, or that there is a better alternative? No. All that has changed is the development of a funding "black hole".

Funding problems

National funding for specialised services such as the Henderson has been devolved to local primary care trusts, which have also been charged with providing local services for less severe personality disorder. As a result, PCTs are re-allocating money for Henderson beds to enable local tier 1-3 service development, leaving the Henderson effectively unfunded.

There is a dedicated staff team and building, there are patients in need, there is a reasonable evidence base, but no-one is prepared to pay for it.

In the wake of these events, and in response to the campaign to stop the Henderson's closure, questions about the research evidence have suddenly cropped up.

A study that evaluated a different treatment model for a different client group in a different one-year residential therapeutic community programme that offered no outreach follow-up at the Cassel Hospital has suddenly been touted as evidence of the Henderson's ineffectiveness. And health minister Ivan Lewis has said the lack of randomised controlled trial evidence about the Henderson validates its closure, even though the majority of NHS-funded complex interventions have not been evaluated in this way.

Few options

More significantly, there are few researched treatment alternatives for tier 4 patients and no comparative studies that might indicate that other models offer a genuine "alternative" in achieving the same degree of outcomes benefit as the Henderson.

The ethics of closing a well-researched cost-saving service, when no alternative treatment has been shown to be as effective, are highly questionable. Research evidence should direct healthcare policy and funding arrangements rather than provide a "spin-doctor" function for them.

The alternative is a society at the mercy of the whims of policy makers and commissioners, where empirical research is misappropriated and used as a marketing tool. I would call on researchers who have been involved in research around personality disorder and therapeutic communities to lobby Ivan Lewis and the impending public consultation on the Henderson's closure (the largest of its kind, involving 62 PCTs), and to ensure that their data is not being used to infer unreasonably, or invalidated where it was once lauded.

When I became an empirical researcher, I did not bank on extending my ethical responsibility beyond primary dissemination. Sadly, it now seems that we should all be looking over our shoulders to ensure the research findings we generate are not misinterpreted and abused in this way.

To find out more about the Henderson campaign, visit www.tc-of.org.uk