No Dissing! NHS Choices Behind the Headlines needs to repair relationship with its readers

my knightA knight in tarnished amour

Although by no means perfectly dependable, the NHS Choices Behind the Headlines is generally a useful resource for lay and professional consumers bombarded by distorted coverage of science and health information in the media.

I cheered the headline and NHS Choices Behind the Headlines’ coverage  of a PLOS Medicine article

Half of medical reporting ‘is subject to spin’

According to its website

NHS Choices Behind the Headlines

Is intended for both the public and health professionals, and endeavours to:

  • explain the facts behind the headlines and give a better understanding of the science that makes the news,

  • provide an authoritative resource for GPs that they can rely on when talking to patients, and

  • become a trusted resource for journalists and others involved in the dissemination of health news.

NHS choicesThe website explains its origins:

Behind the Headlines is the brainchild of Sir Muir Gray, who set up the service in 2007.

“Scientists hate disease and want to see it conquered,” said Sir Muir. “But this can lead to them taking an overly optimistic view of their discoveries which is often reflected in newspaper headlines.

And then a quote that I will surely use in the future with appropriate credit:

‘In the 21st century, knowledge is the key element to improving health. In the same way that people need clean, clear water, they have a right to clean, clear knowledge’ Sir Muir Gray.

A while ago I covered exaggerated claims by a UK scientist that he was on the verge of providing an inexpensive blood test for pregnant women to determine if they were at risk for depression. The peer-reviewed article  was seriously flawed in itself, but then journalists and media – including notably The Guardian – uncritically broadcast the scientist’s hyped, crassly self-promotional account of the importance of his work. I was pleased that Behind the Headlines  offered a much more sober and balanced perspective.

But in this blog about a story in Behind the Headlines, I’m going to chastise NHS Choices for its disrespect of patients. I will suggest an apology to its readership is in order.

Apparently Behind the Headlines has already received a number of complaints about the story and summarily dismisses them.

trust me 2Being ‘a trusted resource’ is a relationship with a readership that can be damaged by a single bad story that violates readers’ expectations that they are dealing with an unbiased source.

NHS Choices Behind the Headlines’ recent coverage of the PACE follow-up study fell short of its usual performance. Instead of an independent assessment, it uncritically accepted authors’ self-promotion. True to its Behind the Headlines branding, it suggested coverage of the study in the Daily Mail of the PACE was exaggerated, but then NHS Choices and its Bazian consultants failed to apply a basic understanding of clinical trials in parroting the PACE investigators’ hyping of their results.

Compare the title of the Behind the Headlines article: “Exercise and therapy ‘useful for chronic fatigue syndrome’ “ to my recent blog post. You’ll see explain why I think the PACE follow-up was uninterpretable.

By the time of follow-up, many patients were receiving treatment, but not the one to which they had been randomized.

The effects of the initial assignment could no longer be evaluated.

At follow-up, the most straightforward interpretation of the clinical trial was that any differences between groups and outcome had disappeared.

A later blog post will compare the Behind the Headlines account to my critique of the PACE study. But in this one, I’m going to cover an offensive “box” in the Behind the Headlines that was amplified in the gloating comments of the journalist on Twitter and in the comments section of the Mental Elf blog. I then note that in 2014 he had made offensive comments that should have been actionable by Behind the Headlines.

The mark of ethical and responsible coverage of medical articles in the media is that journalists do not rely on investigators’ own account of what they found and what it means. Such single sources have a well-established bias and are known to be vulnerable to investigators’ self-promotion and exaggerated claims.

Rather, the media coverage should introduce a named independent source who can be reasonably expected to offer their interpretations of a study without apparent conflict of interest or other bias. The named independent source should be recognizable as an expert.

The unnamed author/editor of the text in the box

NHS Choices is supposedly committed to providing tools to empower patients and professionals to get behind the headlines to decide for themselves about news coverage. Behind the Headlines is not transparent. The identity of the specific journalist-editor having responsibility for what is said is shrouded in secrecy. So much for being able to evaluate source credibility.

But in this case, the journalist unmasked himself with a tweet.

more 2015 gerald

And then

gerald 2015

oh fuck

 

 

 

Blair became traceable to a website bio

Gerard Blair bio from blog

He can be further associated with a comment left on the blog post by Simon Wessely at Mental Elf

orig Gerald on Mental Elf

But he is a repeat offender. He ridiculed patients last year when he was celebrating another article at he edited for Behind the Headlines.

gerardblair

An analysis of the text in the box

To view in context the text that I will be analyzing, click here.

An ambiguous opening move

It’s fair to say research into PACE has attracted a great deal of controversy. This body of work has been criticised by one of the leading patient associations for people with CFS/ME, the ME Association.

This latest study prompted a press release from the ME Association, claiming its methodology and that of previous studies was flawed and lacked “objective measures of outcome”.

Keep in mind that what is contained in the box is supposed to serve as the sole independent evaluation of the PACE investigators’ well practiced promotion of their study. What is going on here? Is this a bold move at patient empowerment and recognition of patient citizen-scientists as credible sources of critique. After all many people with CF/ME had considerable educational and professional achievement before they were laid low by their illness. And many of them continue to contribute to the scientific literature, as in letters to BMJ.

Here is a well-crafted, well documented example.

But is this nomination of a patient voice as the outside expert a setup? Is this a more devious effort to inoculate the arguments of the PACE investigators against criticism by the mysterious Behind the Headlines author, now unmasked as someone who holds patients in contempt?

The readership of Behind the Headlines is a mixed audience, including GPs and other physicians. Are they going to buy into patient empowerment and patient as citizen-scientist to accept its expertise? Or are readers being primed to dismiss it? And maybe with the suggestion that no credible critics could be found?

We aren’t given the details of why the ME Association considers the PACE as flawed. We don’t know what previous studies the Association criticized as also flawed. We really don’t have a means to understand “objective measures of outcome” unless we do some digging into the literature. But Behind the Headlines is supposed to free readers of the necessity of literature reviews, because it is a trusted source that we can depend on having done it for us.

Then Behind the Headlines undermines any appearance of credibility for the ME Association:

In turn, the ME Association has been criticised by some as pursuing a specific agenda that aims to shut down any research that suggests CFS/ME may have psychiatric, as well as physical, factors.

Among the cheap tricks: who is the mysterious source of this criticism and how do readers evaluate source credibility? We are nonetheless encouraged to dismiss the ME Association as having a “specific agenda.” Can Behind the Headlines find no critics of the PACE trial who have not been criticized or do not have a specific agenda? With critics having only one shot, as a matter of fairness, Behind the Headlines should present a critic untarnished by mysteriously undermined credibility with an argument that can be independently evaluated.

And let’s keep in mind the context: the PACE investigators are accumulating lots of criticism for their aggressively pursuing an agenda in distorted reporting of their study at great odds with the evidence they have produced. And for defying international standards in withholding the data that would allow evaluation of their credibility.

Washed down the drain with any credibility for the ME Association is the notion that research should be scrutinized if it emphasizes the unsubstantiated, but alleged strong psychiatric component to CFS/ME. What evidence is there for this emphasis and what is being lost when the emphasis is so exclusive of other considerations?

Apparently it is okay for a journalist identifying himself with a Behind the Headlines article to disparage a patient group in social media.

Behind the Headlines provides a means for readers to complain. Some readers used it to complain about this story and the journalist’s depiction of it in the social media. Behind the Headlines replied by indicating they had reminded the journalist of a policy prohibiting use of offensive or inappropriate language. The Respondents for behind the Headlines deemed the article otherwise appropriate.

In the UK, it is still okay to disparage patients with chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) because their humanity and commonality with us is not appreciated. Ridicule and disrespect are acceptable speech in polite society, not hate speech.

I lived through a period in the United States where some people were awakened that they could not similarly openly speak with disrespect for black people. Sure, recent events clearly show the Americans have a long ways to go in solving the problem of racism. But most white people are much more careful about how they talk about black people.

Birmingham_campaign_water_hosesI recall as a white high school student living on welfare in a public housing project, the younger white people learned to speak differently of black people than some of their elders did. We were provoked by black people trying to assert their rights to use the same public facilities as white people in the South and the ugly response they received. For many of us, 1963 was when we learned to speak of black people differently.

Acceptable language of a fictional 1963 Review of lunch at Woolworths, Birmingham Alabama that soon became unacceptable.

 The Woolworths lunch counter gets consistently positive reviews, especially for its pleasant waitresses. However, a handful of Negroes complain about segregated seating and that they would be arrested if they sat in the white section. But why would they want to sit with white people anyway?

The locals point out that these complaints come mainly from outside agitators. Birmingham Negroes view the large colored section of the lunch counter as just as clean as the one reserved for white people. The same goes for the toilet for colored peoples except maybe for when the Negroes don’t clean up after themselves. Furthermore, outside agitators like the Southern Christian Leadership Conference have failed to attract many mature Negroes to their protests and are relying on high school, college, and even elementary school students, often recruited without their parents’ permission.

Why should we care about disrespect in the media directed towards people with chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME)? It’s too easy to think of many of these people (and healthy able-bodied persons get to talk to them as THESE people) as incurably sick people just cost the UK government money. Why, they are just a burden to themselves and to others. And the UK government has big problems ahead deciding how to deal with people with long-term medical conditions such as diabetes and dementia who are threatening to overwhelm the NHS. Hmm..

Martin_Niemöller_(1952)Pastor Martin Niemöller (1892–1984) warned us that we should all be concerned about a casual attitude toward hate and disrespect directed towards one vulnerable group eroding the respect accorded to others whom we think are immune to it.

First they disparage people with CFS and ME.

Trump mocking journalist

Then journalists with visible disabilities

Then homosexuals

homos curse with cancer

And then they went after the old, frail, and demented

 

demented

then thet came