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BMJ Editor's Choice: Secrets in Healthcare: AllTrials, Lobbyists and Patient Confidentiality

Firestormm

Senior Member
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Cornwall England
23 May 2014

Secrets in healthcare

Navjoyt Ladher
, clinical editor, The BMJ

nladher@bmj.com

The BMJ, with its commitment to transparency and open data, is not a great fan of secrecy.

The European Union’s Clinical Trials Regulation, passed last month, stipulates that a summary of study results should be made available within one year of trial completion for most European clinical trials (doi:10.1136/bmj.g2579).

The regulation’s introduction was in part due to campaigns such as AllTrials (alltrials.net), backed by The BMJ. Showing why this new legislation is so important, a research paper by Lamberto Manzoli and colleagues looks at randomised trials of vaccines and analyses the time from completion of the trials to their publication in peer reviewed journals (doi:10.1136/bmj.g3058).

The survey found that delays to publication were common and that over a quarter of trial results remained unpublished after four years.

In a linked editorial (doi:10.1136/bmj.g3259) Christopher Jones and Timothy Platts-Mills outline the various obstacles to timely publication of trials:

"In short, sponsors, authors, and journal editors all have interests, and none of these interests align exactly with the public’s interests in prompt access to trial results and publication of peer reviewed manuscripts."

It’s clear that much work still needs to be done to increase the transparency of research, so news of the European Medicines Agency’s U turn on its plan to allow public access to clinical trial reports has been met with disappointment and surprise (doi:10.1136/bmj.g3432).

In a BMJ blog, Tom Jefferson and Peter Doshi, two of the authors of the recent Cochrane reviews of neuraminidase inhibitors, and Trudo Lemmens describe the damaging effects these changes could have (bmj.com/blogs).

Lobbyists

The hidden interests of lobbyists also come under scrutiny this week (doi:10.1136/bmj.g2908), with calls for media organisations to be more transparent about the potential conflicts of interest of interviewees.

The perception that lobbyists and think tanks represent an independent point of view is false, argues Meg Carter, and she highlights the BBC’s recent coverage of the debate over plain packaging of tobacco products as an example.

A member of the right wing think tank the Institute of Economic Affairs was invited on to BBC Radio 4’s Today news programme to argue the case against brand free packaging.

The arguments presented were similar to those of the tobacco company Phillip Morris, one of several big tobacco funders of the institute—links that the BBC failed to clarify during the debate.

Lobbyists are active in many areas of healthcare where businesses have a vested interest. Not only tobacco but salt, sugar, climate change, health service delivery, and alcohol are all areas that are subject to attempts to influence legislation and policy.

In the United States the spend on healthcare lobbying in 2012 was just under $0.5bn (doi:10.1136/bmj.g135).

It’s a big business, and key players will often be invited to offer comment and opinion in the media. Where there are commercial and competing interests it is vital that media organisations make these clear so that audiences can make an informed judgment on the issues being discussed.

As Tamasin Cave, director of Spinwatch, explains in Carter’s feature,

"Lobbyists and the interests they represent have a right to be heard. But all of us—including the media—must engage in a more mature discussion of lobbyists’ role. End the secrecy and everyone will benefit."

Patient confidentiality

One form of secrecy that is an essential part of healthcare and building trust with patients is confidentiality. With the advent of text messaging, email, and social networking, it can be difficult to know what measures are needed to ensure that communication to and about patients is appropriate and secure.

Bradley Crotty and Arash Mostaghimi highlight the ethical and legal considerations of confidentiality in the digital age (doi:10.1136/bmj.g2943) and offer practical advice on safeguarding patient information to ensure that what needs to be secret stays that way.

Cite this as: BMJ 2014;348:g3439