Copy them inBMJ 2008; 337 doi: https://doi.org/10.1136/bmj.a2324 (Published 04 November 2008) Cite this as: BMJ 2008;337:a2324
- Tessa Richards, assistant editor, BMJ
When reorganising health services becomes an Olympic sport, Team GB is sure to do well. Our politicians’ enthusiasm for change seems unrivalled. The only problem I foresee is their tendency to promise more than they deliver. Take the 2000 NHS Plan, for example. This included two pledges to provide patients with more information. The first stated: “Letters between clinicians about an individual patient’s care will be copied to the patient as of right.” The second: “Patients will be provided with smart cards to allow easy access to their medical records.”
Eight years on, in a threatening economic climate, the unedifying saga of Connecting for Health, the NHS’s £12bn (€15bn; $20bn) computerised records system, continues. Recent concerns—raised by a review of the programme (www1.imperial.ac.uk/resources/4565EF18-662B-448B-90C2-E7372B4C2E09/) and “live” experience with smart cards in one NHS trust—have centred on its potential to put patients at risk of iatrogenic harm. Now its very future is being questioned (Financial Times, 28 Oct, www.ft.com/cms/s/0/50b13312-a48f-11dd-8104-000077b07658.html).
Progress on copying letters has been better but not impressive. Data collected in a 2008 survey by the Healthcare Commission show that trusts vary hugely on implementation of this pledge. Overall, it looks as if around two thirds of patients are still not being copied into the correspondence between their GP and consultant.
This failure to roll out a simple, low cost measure to help patients understand what is happening to them and why is baffling. It can’t be blamed on lack of guidance: that’s there in spades (www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4007561). Furthermore, some clinicians are delivering on the government’s pledge. So what’s preventing the rest?
It may be lack of will, suggests Paresh Jobanputra, a consultant rheumatologist at Selly Oak Hospital, Birmingham, and an early adopter of copying letters to patients. “Some doctors argue that patients won’t understand the letters and ‘dumbing’ them down is too time consuming,” he said. But that’s not been his own experience, and his research indicates that copying patients into the correspondence brings benefits. Letters enhanced mutual understanding, and patients were able to correct inaccuracies in their records (Rheumatology 2006;45:493-4).
Promoting patients’ understanding of their health is important. Patients with low health literacy have poorer health and higher rates of admission to hospital and are not good at complying with treatment and advice (Institute of Medicine, Health Literacy: A Prescription to End Confusion, Washington, DC: National Academies Press, 2004). The impact of low literacy on healthcare costs is sobering. Last year a report from the University of Connecticut, flagged up by the online press release source Business Wire, estimated that low health literacy cost the US economy between $106bn and $236bn each year. Although these are only ballpark figures, such colossal sums must provide food for thought in all countries in these cash strapped times. At the very least they should stimulate a drive to increase health literacy through efforts to inform, educate, and involve patients in their health care.
The effectiveness of a range of strategies to do just this has recently been reviewed (BMJ 2007;335:24-7, doi:10.1136/bmj.39246.581169.80). One finding was that information works best when personalised to the individual. This is common sense, and what better learning tool than a good consultant letter? It fills the gaps in the patient’s recall of the consultation, provides a reference point for often much needed reflection, gives an opportunity to identify inconsistencies, and helps frame further inquiry and personal research.
As care—and not infrequently the medical record too—fragments among a widening variety of healthcare professionals and a growing panoply of “health outlets,” maintaining continuity of care is getting harder. Arguably, the best protection that patients have against poor continuity is to understand their medical problems and keep as full a file as they can about their own case.
Years ago I was thrilled to be allowed to look after my own antenatal records. Twenty years on I sit with fellow patients in outpatient departments where we can only eye our bundles of notes in wire trays kept well out of reach. Some are stamped with the words “This case note must not be handled by patients.” This does not feel like progress. Why not give patients the option to read their notes while they wait to be seen? It has to be more productive than leaving them to watch daytime television or read old copies of Hello magazine.
And should we not go further than routinely copying patients into correspondence? Why not extend this courtesy to the results of blood tests and other investigations? It’s disquieting to have no idea when, or even if, your test results will be relayed back to you. Doctors should not assume that patients won’t understand them or don’t need to know if the results are normal. Although it’s time consuming to relay results and discuss any uncertainties and dilemmas they may raise, it’s a great way to promote learning among patients.
Health literacy is now firmly on the European Union agenda, spearheaded by a declaration from the European Patients’ Forum (www.eu-patient.eu). This raises the question of who the major providers of health information should be. If doctors don’t grasp the opportunity, others, including the drug industry, will.
Returning to sporting parallels, I have a suggestion. Go easy on reorganisation. The medal that health ministers should aspire to win in the 2012 Olympic Games is the one for the most health literate population.
Cite this as: BMJ 2008;337:a2324