Hype, Hope and Headlines

Went to another excellent and fascinating Progress Educational Trust event last night, but this was the first time that I had the very strong instinct that there was more left unspoken than was actually said.  The knives remained sheathed but the sabres were rattling.  The title was Hype, Hope and Headlines: How should breakthroughs in fertility treatment be reported – the topic being how to sort out what media coverage of new fertility treatments means for patients and whose responsibility it is to get the message right.

The impetus for the event had come from a letter to The Times from Professor Nick Macklon of Southampton and Professor Siladitya Bhattacharya of Aberdeen who had been upset by the claims that seemed to be being made earlier this year by Dr. Simon Fishel of the CARE group of clinics about the development of time-lapse photographs of developing embryos.  Intriguingly it look an awfully long time for it to emerge that this was indeed the subject that had prompted the letter to the newspaper.  Everyone was very careful at first not to mention it, but as the evening progressed and speakers and contributors from the floor became bolder, it emerged that this was indeed what we were all really talking about.  And despite the excellent Fiona Fox’s attempts to widen the debate, it was clear that it was the rivalries between units, particularly between those in the private sector who may have a marketing reason for promoting ‘breakthroughs’ and the poorer NHS ones (claiming greater integrity?) that was at the heart of the evening’s subject matter.

The speakers were the main contenders, Simon Fishel and Nick Macklon, plus Dr Hannah Devlin, Science Editor of The Times.  Simon Fishel kicked off in provocative style.  Did journalists understand that all scientific knowledge is provisional?  If a healthy child results from an ‘unproven’ treatment doesn’t this prove it works?  If fertility specialists waited for gold-standard random controlled trials it would be far too late for many patients because their fertility window would have passed and anyway and because IVF is such a fast-developing field, the results would probably be out of date by the time you got them.

Nick Macklon started by imagining a couple sitting in the morning with yet another failed pregnancy test between them and despair abounding.  They open their newspaper and read about a wonderful new treatment that is promised to increase pregnancy or live birth rates (and reporting outcomes in these different ways is a subject of debate in itself), decide that they will pursue this latest guru with his (and it usually is his rather than her) magical technique, and then go off to work with lighter hearts.  Professor Macklon believes that headlines that give false hope are damaging, both for the dreams and expectations of would-be parents but also for the reputation of fertility clinics generally.  He would like journalists to be more critical and to, in Fiona Fox’s words, interrogate the excitement of the researchers who are behind the claims and keep in mind their responsibility to readers, rather than simply fulfilling the needs of a voracious news editor.

Hannah Devlin said that indeed it was only too easy to get fertility stories into the papers as news editors gobbled them up.  She felt that it would be patronising to readers to keep information from them about incremental progress in improving IVF techniques, but that she tried to avoid terms like ‘breakthrough’.  Maintaining standards is always very difficult under the time pressure of producing a daily newspaper and if other papers were covering a story it would be very hard for her paper not to follow.

In response to a question about patient choice, Nick Macklon said that it was not what was said by fertility doctors but how it was presented that mattered.  New developments need to be talked about with the nuance they deserve and patient expectations of the application of ‘advances’ managed in a way that keeps them realistic.

From the floor Sue Avery from Birmingham Women’s Hospital was clear that doctors have a responsibility for the impact of their pronouncements on patients and gave the example of a once very eminent fertility specialist who had implied that children conceived from frozen embryos had a higher chance of developing cancer.  Sue and other colleagues had to handle the fraught ‘phone calls from patients asking if they should abort their foetuses from frozen embryos as a result.

A rather holier-than-thou question about market gain being behind some ‘colleagues’ contact with the press was well handled by Simon Fishel who suggested that this person could probably answer his own query.  Meow.  Apparently unabashed, the original speaker went on to mention the role of the professional societies in giving unbiased information to the public and said that he often referred patients to the American Society for Reproductive Medicine leaflets as they were much better written and more informative than anything from the UK.

There were no questions or comments from fertility patients last night so it was unclear if any were in the audience, but if they were there I’m not quite sure how they would have been left feeling.  As I said earlier, there seemed so much that was being left unsaid and from the mutterings from the people in the row behind me, there were a lot of rather grubby bulging boxes being sat on very tightly.  So maybe the fertility industry didn’t come out of it very well but lawyer James Lawford Davies spoke I think for many people when he applauded the high standard of science reporting in most of the UK media and the important role of bodies like Science Media Centre in encouraging scientists to engage with the public.  That’s at least something to applaud.

For another report of the meeting and some great links see Kate Brian’s blog http://fertilitymatters.org.uk/fertility-treatment-2/hype-hope-and-headlines/

 

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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3 Responses to Hype, Hope and Headlines

  1. marilynn says:

    I am so disillusioned with the medical industry. They have no incentive to heal, only to hook. It’s like every problem has a course of treatment that involves pills taken for the rest of your life or like for infertility, treatment when there really is no realistic chance. Its best to just be very cautious whenever you see a doctor for anything.

  2. oliviasview says:

    I don’t feel quite as disillusioned as you, members of my family including me, having benefitted enormously from the wonders of modern medicine over the last few years. Having a health service that is free at the point of diagnosis and treatment does mean that on the whole money does not influence what doctors do and standards are high…but the fertility industry is a little different with the vast majority of treatments taking place in the private sector.

    • marilynn says:

      Well I have a mother who had Parkinson and Alzheimer for 10 years and did not even know my name was in a coma nearly completely bedridden unable to chew food or go to the bathroom. I read all her medicine and found out all of it causes delirium and dementia. All the heart and cholesterol meds are the worst and then it caused Parkinson symptoms so they treated that and its medicine caused disillusion. Well I took her off everything with no help from the doctors and she came back to normal. I had to tell her her husband my father died during the years she was under. Now I’m telling all my friends to check their parent’s heart and cholesterol and blood pressure medicines and they are starting to wake their family up from Alzheimer. They are all just sleeping, its terrible. Doctors won’t help take them off the medication you have to do it yourself and it is very scary. Think about it the doctors have no incentive to have these people awake and healthy. So if you saw anyone with Alzheimer and read their medicine and then tried to talk to their doctor about helping them, you would be disillusioned and mad. Luckily it does not cause permanent brain damage but the physical damage from being bedridden or institutionalized is horrible. Shes just now learning to walk again.

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