Showing posts with label basis. Show all posts
Showing posts with label basis. Show all posts

Saturday, 28 September 2013

Professionals need to be held to account on basis of open data

data Professionals need to be held to account by people whose understanding of data goes deeper than the ability to read a dashboard. Photograph: Kacper Pempel/Reuters

Every political initiative has its bogeymen – the simple caricature that sums up the evil that must be fought. For the architects of the New Labour programme to reform public services, it was the public servant who failed to see that his or her own interests were not the same as the public interest.

A favourite example was the feckless orthopaedic surgeon. His manner with patients was brusque. His attitude to safety was one of bravado. He (and it was definitely a he) regarded bureaucracy as irksome. And he thought his long waiting list was evidence of how much in demand he was.

From the publication of the new NHS plan in 2000, New Labour had an answer. More money would be put into public services. And an intelligent, data led bureaucracy with a democratic mandate would put the provider interest back in its box and champion the interests of patients. Don Berwick's report into patient safety is the obituary for that whole project. It is appropriate to remember the good as well as the bad that came from it. There is no doubt that it was conceived with the interests of the patient in mind. And, it led to significant improvements in standards of care from which many patients have benefited.

However, after reading the reports from Robert Francis into Mid-Staffordshire, from Bruce Keogh into high-mortality hospitals and from Don Berwick into patient safety there can also, no longer, be any doubt as to how corrupting it has been to the ethos of public services.

Part of the problem was the over-emphasis of a narrow range of key metrics – a feature of policy in both health and education. Huge political capital was staked on making certain numbers move in the right direction. A bureaucracy tasked with making this happen, did what it was asked. Increasingly, imaginative ways were devised to fiddle the data or change practices in ways that achieved nothing except to create the appearance of improvement. The metrics and indicators that populated the dashboards were selected on the basis of those that could be managed, rather than those that represented a genuine improvement for patients.

Most devastatingly of all, people began to believe that the performance on a dashboard really was the same thing as delivering high-quality care. The numbers began to count for more than anything else, more than the judgment of skilled professionals or the complaints and distress of patients. In extremis, it led to the suppression or dismissal of any information that seemed to contradict the official numbers.

Equally corrupting was the tendency it bred to treat professionals with mistrust. The response to the orthopaedic surgeon with the long waiting list was an unyielding demand from Whitehall that waiting lists would be shortened. It worked. Much of the NHS waiting list problem was fixed to the benefit of patients. But it also had the effect of removing from clinicians the authority to decide which patient they treated next. It created the fiasco of the manager in the A&E department telling doctors where to direct their attentions on the basis of performance targets rather than the needs of the people in the waiting room.

Don Berwick's report on patient safety in the NHS has been attacked for being "strong on platitudes" and lacking in clear instructions. That is the great strength of his report. He reduces it down to just four principles – focus on quality, listen to patients, be transparent and, most crucially, trust the staff. Instructions from on high are part of the problem, not the solution.

This does not mean that the NHS should row back on the use of measurement. Berwick recognises the central role that information, data and measurement have in understanding quality. But data is a means to understanding not an alternative to it. Professionals need to be held to account on the basis of open and transparent data. But they need to be held to account by people whose understanding of data goes deeper than the ability to read a dashboard.

Trusting professionals does not mean returning to a world in which they are unaccountable. As with all caricatures, the feckless orthopaedic surgeon may have been an oversimplification but it was not a myth. Berwick does not for a second suggest that we should be any less demanding either of our public services or of the people who work in them. The standards we aim for should be higher. But the mechanisms we use to achieve this must be built out of transparency and trust; professional pride and honesty. Not out of directives and targets.

Roger Taylor is director of research and public affairs at Dr Foster

This article is published by Guardian Professional. Join the Healthcare Professionals Network to receive regular emails and exclusive offers.


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Monday, 5 August 2013

Wild type genetic background affects outcome even for diseases with a simple genetic basis

Main Category: Genetics
Article Date: 05 Aug 2013 - 0:00 PDT Current ratings for:
Wild type genetic background affects outcome even for diseases with a simple genetic basis
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If two women have the same genetic mutation that puts them at higher-than-average risk for a disease such as breast cancer, why does only one develop the disease?

In the current issue of PLOS Genetics, Michigan State University genetic scientists have begun to understand how the rest of the genome interacts with such mutations to cause the differences we see among individuals.

"It's been known for a while that genetic mutations can modify each other's effects," said Ian Dworkin, MSU associate professor of zoology and co-author of the paper. "And we also know that the subtle differences in an individual's genome - what scientists call wild type genetic background - also affects how mutations are manifested."

Dworkin and Sudarshan Chari, zoology doctoral student and the paper's lead author, wanted to know how common it was for wild type genetic background to alter the way genetic mutations interact with each other. This is the first time that it's been examined in a systematic manner, Dworkin added.

Using the fruit fly genome, the researchers found that wild type genetic background affected the outcomes of interactions between genetic mutations about 75 percent of the time. This could have huge implications in how scientists construct genetic networks - maps of how genes interact with each other.

"It may be that some crucial portions of genetic networks are missing," he said. "It also seems that network descriptions are more fluid than we thought."

Fruit flies have been called humans with wings, genetically speaking, due to their similarities. By focusing on wings and a genetic mutation that alters them, the researchers demonstrated the influence of wild type genetic background was actually quite common.

The broader implication for humans is that even for diseases with a simple genetic basis, variation in the genome may matter for both understanding and treatment, Dworkin said.

This new insight explains how, in an example like breast cancer, every woman's genetic background is likely influencing how the mutation is expressed, causing different disease outcomes. The research also may help explain why some people benefit from a specific treatment for a disease, while others get no benefits or become resistant to a drug after a short time.

It's likely that most diseases with a suspected genetic component, such as cancer, asthma or Parkinson's, involve reactions between more than one set of genes. For Dworkin and Chari, the next step is to tease apart the intricacies of what's happening.

"Is it just the two pairs of genes that are interacting?" Dworkin asked. "Or is it that the two genes are interacting and then many other genes are modifying that reaction? This will help us understand how much complexity is involved."

Article adapted by Medical News Today from original press release. Click 'references' tab above for source.
Visit our genetics section for the latest news on this subject.

The research is funded by the National Science Foundation grant number MCB 0922344.

Michigan State University

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