An interesting article on SciDevNet called Trial practitioners must become media savvy drew my attention to this paper: South Africa's Experience of the Closure of the Cellulose Sulphate Microbicide Trial
In PLoS Medicine.
It is an interesting paper about the media reporting after the ceasing of a trial of a microbicide as a preventative measure for HIV in South Africa. Despite what looks like some fairly good efforts by the researchers to control the story, it escaped them and they report became overblown & misconstrued.
They given an excellent list of suggestions for the future of communication in these sorts of events:
* Emphasise community education.
* Explain and emphasise to the community that HIV seroconversion is the only way to measure effectiveness of new prevention technologies including microbicides (i.e., there are no surrogate markers of infection that can be used in trials).
* Educate the media and community about clinical trials, including regulatory procedures and good clinical practice guidelines followed by clinical trialists.
* Develop early drafts of press releases of all possible DSMC outcomes—positive, negative, and no effect—in partnership with local researchers and community representatives.
* Inform local ethics committees, drug regulatory authorities, and health authorities of trial outcome prior to press release.
* In drafting press releases, be sure to include the contribution of in-country investigators, community advisory boards, and other relevant bodies.
* Issue the press release in developing countries where the research is conducted. At the press conference, it is valuable to include the local principal investigator and representatives of the trial sponsor, ethics committee, and the local health authority.
Wednesday, August 15, 2007
Communicating bad trial results to the media
Friday, July 20, 2007
Public Perception of Research: One Example
An interesting example of the public perception of research can be found here: Autism Research Ethics - Is It Ethical to Deny ABA to Autistic Infants for Research Purposes? The blogger asks an excellent question, prompted by a scantily described study in the San Jose Mercury News: RESEARCH ON AUTISM IN INFANTS
He states:
The AP is reporting several new autism research projects aimed at studying early clues of autism and other disorders. One such study mentioned is by Dr. Stanley Greenspan which, according to the AP report, will involve two groups of infants - One group will receive intensive behavior training, the other will not; both will be compared through age 5. But is it ethical to deny ABA intervention to infants who are diagnosed or suspected to have an Autism Spectrum Disorder for research purposes?
I suspect the blogger is mistaken to be bothered about this research it is likely to actually be ethical. The main issue is actually the scanty reporting, there isn't enough information given here to truly assess the ethics of the research project. If his characterisation (That this project involves denying effective treatment to children who are diagnosed with Autism) is correct then he is absolutely right this research project would be unethical.
However there are two issues with the case he makes:
Firstly the relevant distinction here is that these infants have not, as far as I can tell, been diagnosed with Autism, they have been indicated to be "at risk" but not diagnosed. There is good evidence for using ABA with children diagnosed with Autism, less for those who are thought to be at risk. Thus this research project one would guess.
Secondly one might be concerned that during the 5 year projects some of the children in the control group become diagnosed with Autism rather than simply at risk. In this case you could be worried that these children would still be denied ABA. I would be stunned if this is the case, medical trials usually have criteria to determine when someone will be exited from the research. These criteria usually involved the development of relevant conditions and the need for treatment.
The issue here really is the scanty reporting:Dr. Stanley Greenspan, a psychiatry professor at George Washington University, is launching a multimillion-dollar study involving parents and babies at risk for autism or attention deficit disorder. One group will receive intensive behavior training, the other will not; both will be compared through age 5.
This gives you enough to be concerned if you have an interest in Autism and not enough to allay those concerns. This points to an ongoing problem, the scanty and over-simplified reporting of science in the public media.
