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Who are the doctor bloggers and what do they want?

Rebecca Coombes

BMJ 2007;335;644-645 doi:10.1136/bmj.39349.478148.59

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Medicine and the media Who are the doctor bloggers and what do they want? Medical blogs are sometimes seen as just rants about the state of health care, but they have also been credited with spreading public understanding of science and rooting out modern day quacks. Rebecca Coombes checks out the medical blogosphere

In “internet time” blogging has been around ter at investigative jour- for almost an eternity. Now, with the possible nalism than journalists exception of the odd intransigent high court are. All sorts of facts judge, blogging has achieved household name about dodgy practices status since catching the public’s imagination appear on blogs long nearly a decade ago. before they reach the The medical “blogosphere” is an especially regular magazines or crowded firmament. The opportunity to access papers; that is both fun and useful, I think.” Silver surfer: blogger Professor David Colquhoun raw, unfiltered material, to post instant com- Today annual awards are given for the best ments, and to share information with a (often medical blogs—including a prize for the best ern day quacks, correct ignorant journalism, niche) community has become an addictive literary medical blog—and competing websites digest interesting stories, or comment on big pastime for many doctors. The field has devel- offer rankings of the best blogs. The site www. official reports, for example. Many also use oped to the extent that devotees rely on their edrugsearch.com ranks more than 400 of the details that would not meet the BMJ’s policy favourite blogs as their first port of call for topi- most popular blogs on health and . on patients’ confidentiality. Dr Crippen, for cal opinion and debate. Taken as a group, the It’s hard to gauge just how popular some of example, keeps a work diary that details con- medical bloggers—the popular ones, at least— these sites are, as top rated bloggers—such as sultations with noteworthy patients. are overwhelmingly younger men, and many BMJ columnist , who writes www. Ben Goldacre says that blogs are popular have a typically masculine geeky humour. badscience.net—keep this a closely guarded because they are more honest than other But the field is far from just a playground for secret. Many of the most quoted and linked-to media: “It is hard to get away with misrepre- the young. For example, David Colquhoun, blogs are by anonymous doctors, who shelter senting stuff when the original source is but a professor of pharma- under fake names click away. “I see it as a way of making con- cology at University Top five blogs on health and medicine to vent opinions on versation public—what is good about it is you College London, is Ranking by www.edrugsearch.com anything from politi- get unmediated expertise. In the old days, you 71 and now a cel- 1. Random Acts of Reality cal interference in the had to rely on a journalist to tell you what, ebrated blogger in (Trying to Kill as Few People as Possible . . .) NHS to how science for example, Iain Chalmers, told them. I think his field. Professor (http://randomreality.blogware.com/) is misrepresented in journalists were often really bad at this. On a Colquhoun thinks 2. Bad Science (www.badscience.net/) the media. blog, there he is. In the press it’s hard to know that a blog’s power 3. MedGadget.com (http://medgadget.com/) NHS Blog Doctor what is true. But with blogs people can link lies in its independ- 4. Kevin MD, Medical Weblog (http://nhsblogdoc. directly to the original source—this never hap- (www.kevinmd.com/blog/) ence. Unlike news- 5. NHS Blog Doctor blogspot.com), by a pens in a newspaper.” papers, blogs don’t (http://nhsblogdoc.blogspot.com/) general practitioner He complains that newspapers will also feel bound to present writing under the plagiarise blogs without giving credit, whereas a balanced picture, pseudonym of Dr blogs will refer and link to a person’s site. And he says, “which, only too often, means giving John Crippen, is described as an “extremely on an online blog people can make instant equal space to people who believe the earth is depressing” look at the NHS. Dr Rant (www. comments, verifying a story or adding more flat and those that don’t. drrant.net) does what it says on the tin: rant information, whereas “in newspapers the com- “On a blog I can just give my view. It’s about medicine related topical issues, laced ment is published a few days after the original ­obviously that—and people can take it or with lots of strong language. These sites article, when everyone else has moved on,” leave it. Also, bloggers often seem to be bet- examine political interference, root out mod- says Dr Goldacre.

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and of zero interest to Medicine and the media the public. So it’s fun to talk about things that do interest the public. It’s Patients’ blogs: also fun to be able to influence politicians and vice chancellors, though do doctors that is rather harder.” He says that before have anything blogs the ordinary aca- demic had no chance to influence anything to fear? much, other than by voting every five years. Blogs written by parents about Now—with a little techni- cal expertise—“they can their sick children’s care can be post stuff for the world to beneficial if handled sensitively. see while sitting in front of the TV or even on a Matthew Hurley and Craig hilltop.” Blogs are also Smith point out the pitfalls easy and cheap to pro- duce—many blog hosts are free. In recent months we have had very different What turns off many experiences of parents using blogs. One fam- would be users is the ily used a blog simply to update family and S

A feeling that the blogo- friends overseas about their extremely prema- OM sphere is a wild west ture baby. It contained a daily record of events, TH RK

A of crackpot opinion- including details of procedures and the names M ­mongers. How do you of staff looking after their baby. In another Professor Colquhoun was switched on to the determine the relative “value” of a medical blog the parents of a baby with rare congenital power of blogs after fighting a successful cam- blog? Ben Goldacre says that it is easy to sift abnormalities used it to keep detailed records paign to halt the proposed merger of Impe- through the huge choice of medical blogs, of medical care and decisions, including discus- rial College and University College London. building up a bank of trusted sites and follow- sions and disagreements with different medical “Everyone was unhappy about it but said it ing trails to new ones. and nursing staff. Both blogs initially caused was a ‘done deal’ and could not be stopped. He says, “I’m a 33 year old doctor, and I some concern among staff. As soon as I started a blog support came flood- most enjoy reading narrow interest maga- The phenomenon of parents’ blogs may ing in, and it was possible to publish raw, zines. A BMJ editorial is always going to be have a unique association with paediatric and unfiltered information instantly. It took only more interesting to me than a Times editorial, a neonatal practice. It is common practice for five weeks after starting the blog to defeat the article more than a New Scientist feature. parents to take photographs of their babies whole daft idea, and that made me realise the The http://science.reddit.com site [a ranking to log their progress. Electronic dissemina- amazing power of the web.” of science writing that is posted and voted on tion makes sharing these experiences easier, After peace descended on UCL Professor by users] is consistently brilliant, much better and for many the blog is simply the modern Colquhoun found he was addicted, and he than anything in the newspapers.” Blogs also photograph album or memory box. Keeping started to publish opinions on quackery and offer users “grand rounds”: informal syndica- a blog can be beneficial to parents: it lightens also on politics, religion, and education. tion of the best from other blogs. For exam- the burden of daily telephone contact and “It slowly dawned on me that all these ple, a group of blogs will take it in turns to provides written support when others reply to pages were closely related, [were] just differ- host a paediatric grand round, rounding up the site. Many parents already publish their ent aspects of ‘endarkenment’ thinking, and the best of that week’s blog entries related to experiences on conventional websites in the the pages got too big to load quickly, so they paediatrics. hope of helping others. Such altruistic blogs are now all supplanted by two proper blogs” Professor Colquhoun adds: “Blogs are include entries on charity affiliated websites, (including DC’s Improbable Science at http:// an enormous step towards real democracy, which can be used to publicise a particular dcscience.net/). though the price for that is that every mad- illness by attracting the media to an individu- Professor Colquhoun says he still gets an man and quack can do the same. Indeed, al’s story. This medium may also lend itself to “enormous” amount of enjoyment from blogs. that is what makes it so important for people whistleblowing in the public interest. “I think they have really had some success in with knowledge, expertise, and honesty to Blogs can be a useful source of informa- spreading public understanding of science and fight back and draw a line in the sand at the tion for patients. Parents go to the internet for even in influencing public affairs (firstly with tide of nonsense that engulfs us. The papers information during diagnosis and treatment of the merger and more recently with withdrawal don’t fulfil that role at all well—and in fact their child’s illness. Blogs narrate an individu- of NHS funding for homoeopathy). My own often exacerbate it.” al’s experience that may not be representative. research is on the stochastic properties of sin- Rebecca Coombes is a journalist, London Parents intent on leading care decisions, in an gle ion channels. I love it, but it is specialist [email protected] attempt to achieve the best possible care for

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their child, could use their own or other blogs evidence in complaints or legal proceedings. In publishing an apology and paying costs. The as a novel way of meeting this objective. This our experience, many parents already keep a internet publisher should have a “notice and information must be viewed with caution, but written journal and photographs logging their take down policy,” whereby offending material it can also encourage discussion and learning. baby’s journey. An identical electronic version may be withdrawn from public access. At our hospital the parent can take a “prescrip- would have no additional legal ramifications. There is also a risk that blogs may com- tion” for information from the community pae- If difficulties arise during care and the promise the right of confidentiality of other diatrician to the patient information library, details are published, potential exists for the patients on the ward or their parents. The where a specialist librarian is available to direct parent-doctor relationship to be compromised. legal and ethical protection of confidentiality the family to reliable resources. Blogging, as a form of publishing, is subject is underpinned by the Data Protection Act Reading a family’s experience of an illness to the laws governing defamation, which aim and by the General Medical Council. Parents and the care given can provide clinicians with to protect a person or an organisation’s repu- should be encouraged to write in a way that a valuable insight into parents’ understanding tation from harm. If you think that you are doesn’t identify individuals. Simple guidance and help identify elements of the care path- the subject of an untruthful, unwarranted, or for parents and professionals needs to be devel- way that need improvement. The temptation mistaken attack on your reputation, you may oped. to contribute to a patient’s online blog needs have been libelled. Healthcare professionals We support the use of blogs by families. careful consideration. Employees who write may feel that a blog misinterprets a sequence Indeed, we aim to provide internet access about their work on blogs have been “doo- of events or, even worse, calls into question for families in the near future to facilitate this. ced”—that is, they have lost their jobs through their competence or professionalism, publicis- However, we recognise the vulnerability of expressing their views in a blog. Instead, more ing this to other parents and staff. Healthcare everyone involved and aim to give guidance effort should be taken to improve opportunities staff must then decide whether they wish to to parents and staff about parents’ and patients’ of communication and the elements of care pursue defamation. blogs. under discussion. If pursued, the publisher (the internet service Matthew Hurley is senior house officer, paediatric Blogging has legal implications. Healthcare provider) may claim “innocent dissemination,” intensive care unit, Queen’s Medical Centre, Nottingham professionals feel vulnerable about the publica- stating that they did not know that any pub- [email protected] tion of unedited material and opinion in real lished statement was defamatory. However, Craig Smith is consultant neonatologist, neonatal time. They may also be uneasy about parents the Defamation Act 1996 makes provision for intensive care unit, Nottingham University Hospitals who keep online diaries that may be used as the publisher to make amends, which includes [email protected]

WHAT’S ON BMJ.COM The dangers of attacking disease programmes for developing countries

Roger England has launched and budgeting processes; the Global Attacking priority diseases systems in the long term is important. yet another broadside attack on Fund to Fight AIDS, Tuberculosis, programmes and calling for the But we also know that suspending programmes for priority diseases in and Malaria must disband and be dismantling of the Global Fund and these programmes prematurely will poor countries (BMJ 2007;335:565 reconstituted as a global health fund; decommissioning of the millennium sacrifice millions on the altar of a and 2007;334:344). In his latest countries must reform their systems development goals is a prescription health systems theory that made little Personal View, he claims that and outsource service provision for returning global health and priority progress since Alma Ata until the AIDS “disease specific global programmes from the government to the private diseases to the backwater of broken movement became the high speed [are] not the way to help Africa,” sector; and everyone should drop promises and failed development. engine on the train of health systems instead that they cause “big the millennium development goals Instead of criticising the movement development. problems for recipients,” and that because they are more trouble than and activities that form the leading money for HIV/AIDS is “the worst.” they are worth. edge of the driving wedge for global Simon Collins, treatment He claims that off-budget money The evidence on hand rebuts or at health reform, England, and more advocate, HIV i-Base, London, leads to distortions; that there are least moderates many of England’s particularly planners, donors, and and International Treatment duplications of plans, operations, claims and recommendations. developing countries, should focus Preparedness Coalition and monitoring; and that priority Priority disease programmes on rationalising increasingly robust Brook K Baker is Northeastern disease programmes are neither cost have shown considerable progress priority diseases programmes so University School of Law, Health effective nor sustainable. in a relatively short period of time. that they work laterally to strengthen Global Access Project His evidence that little is being Currently, the Global Fund contributes health systems. Gregg Gonsales achieved is one statistic: HIV two thirds of international funding for By all means, these same AIDS and Rights Alliance for prophylaxis is reaching only 9% tuberculosis and malaria, and about policy makers should work Southern Africa (actually it is 11%) of pregnancies 20% of global resources for HIV/AIDS, much more vigorously to provide Marco Gomes of HIV positive women. He blames for example. In its short life it has sustainable financing for health in Global Youth Coalition on HIV/AIDS the warped prioritisation of disease funded programmes that have already quantities sufficient for expanding Contact S Collins simon.collins@ programmes on international lobby saved more than 1.8 million lives; human resources for health and i-base.org.uk groups from rich countries. provided antiretroviral treatment strengthening the health systems that England’s prescription for change to 770 000 people; distributed deliver prevention, treatment, and This is a short version of a rapid says that governments must stop more than 18 million bed nets; and care for all health needs. We realise response on bmj.com. The full funding global programmes that do treated two million new patients with that integration of priority diseases version is at www.bmj.com/cgi/ not go through countries’ planning tuberculosis. programmes in revitalised health eletters/335/7619/565#176912.

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Yankee doodling� Douglas Kamerow Wham, bam, thank you CAM is wildly popular in the United States, but what are we supposed to do about it?

I got a phone call the other day from a to know. That’s a potential problem, about the difficulties of systematically man asking whether I did “alternative” given the documented interactions reviewing CAM studies (Annals of medicine. When I told him that I wasn’t between some natural products and Internal Medicine 2005;142:1042-7). in regular practice, he asked for a referral conventional drugs. Surveys in the US The challenges include publication, to someone who could provide this type find that doctors rarely ask about use of expectation, and other biases; difficulty of care. It made me think. CAM products, even though they admit in locating the literature; treatment Complementary and alternative they need to know more about them. variability; variability in use of placebo medicine (CAM) comprises a diverse With all of this activity, it would be or sham treatment; and dealing with rare group of treatments, ranging from nice to know which CAM treatments but serious adverse events. symptomatic interventions to be used in work and which don’t. A number of Critics say that CAM doesn’t deserve conjunction with traditional therapies— Cochrane reviews have looked at CAM a place at the table—that enough time therapeutic touch or meditation—to treatments, and the US Agency for has passed and enough research has unique treatments meant to replace Healthcare Research and Quality has been done to show whether any of these conventional chemotherapy or surgery. commissioned around 20 evidence So many people interventions are safe and effective. CAM includes complex and longstanding reports—systematic reviews—on CAM “use alternative The fact that unequivocal success fields of study, such as , therapies. The UK’s National Institute treatments and stories are few indicates only that the ayurvedic medicine, and homoeopathy, for Health and Clinical Excellence (NICE) seem to derive treatments are placebo and expectation but can also be as straightforward as has explicitly avoided assessing CAM, benefit, it seems effects masquerading as medicine, they taking a specific dietary supplement however, despite calls for it to do so (BMJ a shame to say. And yet so many people use them to lower blood pressure or blood lipid 2007;334:506 and BMJ 2007:334:507). and seem to derive benefit, it seems a concentrations. In addition, in response to a lump them all shame to lump them all together and Americans love CAM. Over a third of mandate from Congress, the US together and throw them out. them report having used some form of National Institutes of Health created throw them out I think a sensible approach is, firstly, CAM therapy in the previous 12 months, the National Center for Complementary for doctors to inquire of patients what and the use is increasing every year. and Alternative Medicine in 1999. Its non-traditional treatments they are Leading CAM therapies include natural mission is to support rigorous research using, both for conditions that the products (supplements and herbals into CAM and to disseminate its ” doctor knows about and is treating and so on), meditation, results. This research ranges from large and for others that have not been dealt chiropractic, and massage. Symptoms randomised controlled trials of CAM with. This will at least allow discussion most commonly treated with CAM products to basic science research to and investigation of possible adverse therapies include musculoskeletal, elucidate physiological explanations interactions. Secondly, doctors respiratory, and psychological for CAM therapies such as acupuncture should discuss truly complementary symptoms. and ayurvedic medicine. The centre symptomatic CAM treatments—for It’s a huge business: Americans has spent hundreds of millions of chronic pain, allergies, or the like—so spend at least $50bn (£25bn; €36bn) dollars investigating CAM products and that their scientific basis can be a year on CAM therapies. An increasing treatments. investigated and understood by the amount of this care is covered by US So why don’t we know more than patient and the doctor, if possible. health insurance schemes, although we do about what works and what Thirdly, for alternative treatments for generally this applies only to the more doesn’t? Part of the explanation is the serious or life threatening diseases such accepted CAM treatments, such as huge number and heterogeneity of CAM as cancer, doctors should assess the acupuncture and chiropractic. About a interventions. Only a small number of scientific evidence for the treatment and third to a half of all spending on CAM is the most promising treatments have try to understand the range of benefit the paid out of patients’ pockets, more than so far been rigorously tested. Part patient expects to receive from it. we pay directly for hospitalisations. of the problem is the nature of CAM Although the US seems to lag behind Despite all this many Americans don’t treatments: they can be hard to quantify the United Kingdom, we all need to pay like to talk to their doctors about the and hard to specify, and often they don’t more attention to the CAM treatments CAM treatments they are using. Only lend themselves to standard research that our patients are seeking out and about a third to a half of patients who techniques such as placebo controlled are willing to pay for and to the evidence use CAM report discussing this with their trials. behind their effectiveness. doctor. Their reasons vary from thinking Furthermore, once research is done, Douglas Kamerow, former US that doctors will not be supportive to it is often hard to assess its quality. Paul assistant surgeon general, is a BMJ saying that it is not important for doctors Shekelle and colleagues have written associate editor [email protected]

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