It is impossible to avoid the outrage and scandal of the News of the World if you were in the UK this week. One media organisation went too far in its pursuit of sensitive data by tapping phones, and there have been hourly revelations since then, revealing a much greater system problem. Has the media lost its way? Yes it has. The “big scoop” has become more important than respect for individuals and their lives, and the right to know has trumped the right to privacy.

As the scandal crosses the Atlantic and more people lose their jobs, the last few days made me reflect about analogies between the media and medical research, and possible lessons for EBM. Like the news headline writers, data is the major part of what medical research is about as well. It is sensitive data because the content is health information of patients. Thankfully, medical research has to go through multiple levels of ethical review before it is carried out and perhaps the rather lame Press Complaints Commission needs to be replaced with a proper code of ethics for journalism and a body that can enforce it.

The history of medical research has had plenty of ethical issues and scandals which have largely led to improvements in guidelines and the way in which research is conducted. Perhaps most importantly, the involvement of Nazi doctors in unethical research during the Holocaust led to the establishment of the Nuremberg code: ten principles of ethical conduct in medical research in 1949. The World Medical Association developed the Declaration of Helsinki to guide the medical research community regarding human experimentation. But scandals still continue to happen. The impact of Andrew Wakefield’s bogus Lancet paper about MMR has led to huge consequences for childhood immunisation across several countries. Conflicts of interest in research and clinical practice have led to inappropriate regulation of medical devices.

Medical researchers have the privilege of working in fields where their findings can genuinely impact human lives, and ethical research can be done in every area of medicine to make treatment and the patient experience better, even in end-of-life decisions in the intensive care unit.

As a researcher with an interest in epidemiology, a lot of my work involves using patient databases to formulate and test hypotheses. The aim is not “to publish or perish” and get as many papers from the data as possible, and nor is it financial reward. We as researchers should always remember why we are doing what we do: to discover more about health and disease in order to improve outcomes for patients.

Think about health care communication to the public. Is it done well, does it lead to informed choice? Do you feel skeptical about the issue, and disillusioned with the current status of communication of health to a wider audience.

Today, at Kellogg College, at the University of Oxford a workshop on ‘Enhancing the Public Understanding of Health Research’ aimed to bring together folk with experience in developing and evaluating materials to help people become better users of health research. The question is, why isn’t the public informed? The two issues when we are faced with research findings, whether it be on TV, in the newspapers or in a scientific journal, are ‘Why should I believe these results,” and “What do they mean?”

Steve Woolshin and Lisa Schwarz authors of the ‘Know Your Chances’ book, talked enthusiastically, and with an array of examples, of the bigger picture and what is out there.

The issue that caught my eye was how invested we all are in exaggeration: manufacturers to sell products, academics to get their research published, journals to get their research cited and picked up by the news and for media to gain more advertising revenue. And so the cycle goes on.

For instance, Dannon's Activia, exaggerated health claims led to a US $21M fine, a further example is a study which suggests, ‘nutrient enhanced water drinks are ''''expensive lolly waters'''' with exaggerated health claims’. All sorts of exaggerations occur on a daily basis ‘Radiation health fears exaggerated, claims Oxford professor’. Just try googling ‘exaggerated health claims’.

My favourite is vitamin D which has reached rock-star status in recent years, as a potential cure for the prevention of everything.

The BBC even highlights medical journals are all part of the exaggeration phenomena: ‘Medical journals have been accused of hyping up the findings of the research that they publish.’

Am I prone to exaggeration, you bet I am! Obviously this is the best site worldwide to find the opinion on the evidence to trust.

The last couple of weeks have taught me a lot about how clinical research gets published and disseminated. On 1st February, our article, titled, “Familial History of Stroke Is Associated with Acute Coronary Syndromes in Women”, was published online by Circulation Cardiovascular Genetics prior to print. This is one of the subspeciality journals of “Circulation”, a publication aimed at scientists generally interested in cardiovascular medicine and research. Over the last few years, several of the major journals have increasingly multiplied into “sub-speciality journals”. For example, “Lancet” has spawned “Lancet Neurology”, “Lancet Infectious Diseases” and “Lancet Oncology”. Not only are the journals able to publish more specialised research that might have been rejected by the parent, general journal; they can also charge more for subscriptions, reprints and so on.

Interestingly, even as an author, I did not receive a copy of my manuscript and do not have access to the journal article, unless I pay for access or buy a reprint. So I will tell you what the gist of the research is. Basically, within the Oxford Vascular Study, a much studied cohort of 90 000 patients from the Oxfordshire general practice population, we looked at about 1000 patients with stroke and about 1000 patients with heart attacks.

Previous analyses from the same study have shown that women with stroke are twice as likely to have female relatives with stroke as male relatives with stroke. In addition, young women with heart attacks are twice as likely as young men with heart attacks to have mothers with heart attacks. Therefore, mother-to-daughter transmission seems to be important. For this reason we looked at family history of stroke in detail among patients with acute coronary syndromes (heart attacks and “unstable angina”).

Firstly, we found that family history of stroke is as common in heart attack patients as stroke patients. Secondly, women with heart attacks were twice as likely to have history of stroke in their mother as in their father. Thirdly, when we looked at the coronary arteries (which supply the heart) directly using coronary angiography, family history did not predict the location of the coronary artery disease or how severe it was. We concluded that family history of stroke needs to be studied in more detail and may well be important in better identifying women most at risk of heart attack, since women are less likely to be picked up by current risk prediction tools used by doctors. Also family history probably has its effect via influences on clotting rather than on arteries directly, given our lack of correlation with disease on angiography.

I spoke with only 1 freelance American journalist and helped write 2 press releases in the week before the article went online. On 1st February, I received an e-mail from the University that the article had been picked up by news brokering websites from Reuters to Yahoo, newspapers and TV from Canada and the Phillippines to India, South Africa and the UK tabloids. I don’t mind telling you I was surprised by all the interest! Even BBC Radio 4 contacted me to go on Woman’s Hour.

I have taken three lessons from this experience. First, a journal article will probably be read by almost nobody, primarily because it is published in a journal, and secondly because access to that journal requires money. Second, although research is published in journals, the immense speed and penetration of the global media/internet machine (based in this case on 3 interviews or press releases!) have led to the devolution of the dissemination of research findings away from journals, even though journals may be the trusted source of the original research. Third, as scientists, if we want our research to be understood by the broader public, then we need to do more than publish articles in journals, we must engage with the media and with the public. Both doctors and patients are more likely to use internet search engines than journals so we have to make sure that Google is well-informed, otherwise a great opportunity for health communication will be missed.