What information I would want as a patient (and what I’d get in Britain)

What information I would want as a patient(and what I’d get in Britain) Richard Smith Editor, BMJ www.bmj.com/talks

The basics • A doctor who listens and doesn’t try to fit me into “one-size-fits-all healthcare” • A doctor who is not captured by the drug industry, the government, my employer, or other “corporate groups” • A doctor who “tells it how it is” but who recognises that sometimes I may want something softer • A doctor who functions well as part of a team and a system

The basics • A health care system that is built around patients not the producers (perhaps not available anywhere) • Health care free at the point of delivery • (“I grew up in a country where health care was a right and carrying a gun was a privilege. Now I live in a country where it’s the opposite way round.” Ian Morrison) • No anxiety that I will be bankrupted • A recognition that I am not just an individual but also part of a family, a community, a nation--that is, others matter as well, not just me • My own access to high quality, evidence based information

Evidence based information • What is evidence based information? • A question is asked: Do antibiotics hasten the resolution of sore throats? • All relevant research is located (hard) • Quality criteria are set and low quality evidence is discarded (most of it) • The rest of the evidence is brought together, perhaps numerically

Tales of evidence based medicine

Tales of evidence based medicine • Sir Arbuthnot Lane removed the colons from London’s rich at the turn of the century with a 10% mortality • Satirised in Bernard Shaw’s Doctors Dilemma as Sir Patrick Ridgeon, who removed the nuciform sac from everybody--except himself

Tales of evidence based medicine • How many of you have tonsils? • In Britain most people over 45 don’t; most under 45 do • Son born in 1982: wife had an enema, public hair shaved, and fetal intrapartum monitoring; all gone when my daughter was born in 1991 • Still happens in Spain, Taiwan, and ?

Sources of evidence based information (in Britain) • I am the chief executive of the BMJ Publishing Group which produced some of the sources of information I’m about to mention • But--probably amazingly to you--I’m paid a fixed salary and so will not benefit financially from increased sales • But I may get fired if everything crashes

Sources of evidence based information (in Britain) • Cochrane Library • Clinical Evidence • Bandolier • Centre for Reviews and Dissemination • NICE (National Centre for Clinical Excellence) • Evidence based journals • Best Treatments (may soon be available in Britain) • Many “half evidence based” resources (But is it possible to be “half evidence based” ?

But…. • Most of the sources are concerned with treatment--and all are patchy • In 50% of cases where people have searched for evidence on effectiveness of treatments they can find no good evidence • On prognosis, diagnosis, harms of treatment there is virtually nothing--so we have only part of the picture • On evidence that relates to me as opposed to a population there is (almost) nothing

And for and from patients…. • There is little (?nothing) for patients • On evidence from patients--as opposed to evidence from research--there is just one systematic source that I know of--DIPEX (Personal experiences of health and illness) www.Dipex.org • They use “purposive sampling” to gather all experiences from patients

So if there is no evidence? • Look for a trial from the meta-register of trials: www.controlled-trials.com • Being in a trial means better outcomes than not being in a trial, even if you are in the control arm • Collect my evidence in a high quality prospective database of all patients

When there is no evidence • Trials need to be randomised (to avoid bias) big (to detect small effects) and simple ( to maximise recruitment)--most aren’t • But we can’t do trials to answer every question • So we need large, high quality, prospective databases--why not everybody?

When there is no trial and no evidence • Collect all clinical questions that can’t be answered (at least two in the average meeting between a doctor and a patient) • Start trials to answer the questions • (We still don’t know the best treatment for acute stroke, but if we had entered every patient in the world who had a stroke into the trial we would have had enough patients in 18 hours)

And what would I get in Britain? • Possibly a doctor who couldn’t be bothered with the evidence (probably not) • Little good evidence based information for patients • Some evidence based information for doctors--but slow and incomplete: National Electronic Library for Health • The emergency room at night--”knowledge poverty”

And what would I get in Britain? • Unlikely to get information on trials or an invitation to join one--unless I insist • Should I have “Please enter me into a trial” tattooed onto my chest? • Some databases--but few; no national one • No systematic collection of questions • Few (er) trials designed to answer questions from patients as opposed to questions from drug companies

And in the United States? • You tell me. That’s why I’m here.

What information I would want as a patient (and what I’d get in Britain)