Family Practice Advance Access originally published online on January 17, 2005
Family Practice 2005 22(2):141-143; doi:10.1093/fampra/cmh710
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Editorial |
Copying letters to patients—will it happen?
Health Organisations Research Centre, Manchester Business School, University of Manchester, Booth Street West, Manchester M15 6PB, UK
Email: Ruth.Boaden{at}mbs.ac.uk
Received 23 September 2004; Accepted 1 October 2004.
Boaden R and Harris C. Copying letters to patients—will it happen? Family Practice 2005; 22: 141–143.
The requirement for clinicians from all fields to offer patients copies of letters written about them to other health professionals was stated in the NHS Plan1 and has been the subject of a series of pilot studies and a set of guidelines.2 However, in the light of the fact that it has not been explicitly included in the detail of the new GP contract,3 it is worth exploring whether as ‘good practice’ there is a strong case for copying letters to patients, given that it is not a contractual requirement for GPs. The context of the development of other national initiatives around patient involvement and IT may also lead to the requirement for copying letters being overtaken by technological developments—or will it?
The origin of the ‘copying letters to patients’ idea is claimed by Cyril Chantler,4 who linked it with the concept of patients being able to retain a summary of their notes to carry with them (or to be accessible electronically) at all times. In terms of national implementation, the Department of Health (DoH) state that "there are no completely new activities associated with the policy on copying letters ... the issues to be tackled are those already required throughout the health service and in good professional practice" (paragraph 1.7).2 However, the BMA have argued that "without proper consideration of resourcing and evaluation of the benefits, we do not believe that GPs should feel obliged to participate in routine copying" (Personal communication: E-mail from Rachel Merett (BMA) to Ruth Boaden, 10 February 2004). There are some who believe that copying letters should have been a part of the GMS contract5 but many GPs appear glad that it is not.6 The policy of copying letters has been linked to the overall policy of increased patient and public involvement: "The purpose of the copying letters to patients policy is to empower patients by ensuring that people are given the opportunity to be aware of what is being written about them".7 The NHS Plan commitment was for copies of all letters to be available, not only those from GPs to other health professionals, although much of the recent debate has been around the role of primary care.
There is legal justification for patient access to records: the Health and Social Care Act,8 the Data Protection Act9 and the Access to Medical Records Act10 all establish a right of access by individuals to reports relating to themselves provided by medical practitioners, and data about them. Access can only be denied where the information may cause serious harm to the physical or mental health condition of the patients or any other person, or where giving access would disclose information relating to or provided by a third person who had not consented to the disclosure.2 Health professionals not wishing to copy letters to patients will apparently have to justify their reasons for withholding that information—patients will be able to complain to the Secretary of State if the policy is not being adhered to in specific practices and individual practices will be asked why they are failing to comply.7 The international context sadly tells us nothing about copying letters—almost all the literature is from the UK and there does not appear to be any other country attempting to mandate copying letters in the way that the NHS Plan did.
There is an argument that copying letters is beneficial for patients: the DoH guidelines2 cite the benefits as more trust between patients and professionals, better informed patients, better decisions by patients about their treatment options, better compliance with taking medication or treatment, more accurate records, patients better prepared and less anxious. This is supported by an increasing body of empirical research, albeit from small studies. For example, views from patients and clinicians about copying GP letters to patients showed that in general, patients felt better informed about their illness and better prepared for their outpatient appointment.11
However, support from a clinical perspective is more mixed. There are some notable enthusiasts; for example, Charles Essex, a paediatrician who regards copying letters as a matter of courtesy: "all that is needed is for professionals to treat patients with respect and treat other people in the way they themselves would like to be treated".12 There has been much concern about the resource implications: the time of doctors and secretarial/administrative staff, the cost of paper, envelopes and stamps as well as time to deal with the additional enquiries from patients that seem to result. Data on how many clinicians already copy letters to patients appear to vary considerably depending on the source but some consider the resource implications to be worth the benefits to patients.
Patient concerns are a major factor in the objections raised by clinicians. The tension between making a letter comprehensible to the patient (perhaps by minimising the use of technical language) and making it sufficiently informative for the consultant in terms of details of the patient and their condition,11,13 leads to concern that the content of the letter may become more restrictive as a result.11 This issue is exacerbated where patients have difficulties in accessing the written word, although many of the pilots for copying letters to patients provided guidance on these areas. Patient anxiety is also cited as a reason for not copying letters and although there are no large-scale empirical studies on this area, several smaller studies have examined this and concluded that it is not a major issue. A study in which consecutive referrals from two GPs were randomized to either (a) dictation in the patients' presence or immediately after they left the room or (b) whether the patient was sent a copy of their referral letter, concluded that both immediate dictation or receipt of a copy letter relieves patient anxiety that the referral might be delayed.14
It is possible (or even perhaps inevitable) that copying letters will alter both the nature of the consultation and also the relationship between the clinician and patient. Copying letters can be viewed as one aspect of a broader shift towards more sharing of information with patients.15 The more open the relationship, the more health professionals have to consider the ethical implications and to influence patient choice rather than "using their inherent power".15 Although this has to be viewed within the wider policy context of greater patient involvement,16 such top-down approaches to ‘choice’ may not be what the patient wants. This issue is exacerbated when uncertainty and risk is present, as it generally is in clinical practice.
This affects both clinicians and patients in that clinicians "have a responsibility to check the patient's understanding of the issues involved"15 but patients "need to be clear that are circumstances where there is considerable debate amongst clinicians about the relative effectiveness of different treatments".15 However, there is no evidence to suggest that this should stop doctors from copying letters.
Issues for both clinicians and patients arise from consent and confidentiality considerations, but these are perhaps even more important when electronic records are considered. However, even with paper records and letters there are concerns that the wrong person may get access to a letter.11 Many of these issues are common to consent issues around access to medical records in general, and when all medical record information is held electronically, and patients have some access to this, copying letters will be obsolete. However, this long-term aspiration, embodied in the National Programme for Information Technology (NPfIT) is very ambitious—it is promised by the end of 2007 (at the latest), although there is increasing scepticism about the achievability of these deadlines. Some argue that the resource implications are similar whether information is on paper or electronic, and that "the existence of an electronic record is irrelevant".17
The wider policy context is arguably different now from when the NHS Plan was developed. The recent publication of the NHS Improvement Plan18 moves away from focus on providing information to patients for its own sake to information provision, using technology, to enable patient choice. There are a variety of policies that impact on the way patients use the service (choice, direct payment, expert patients and access), as well as how the service is provided (diversity of provision, foundation trusts, etc).19 Other policy issues that impact on copying letters include the new GMS contracts, National Service Frameworks, the wider impact of the Freedom of Information Act, and the latest standards framework for the NHS.20 The public perspective can be elicited from comments made by the director of NHS Patient and Public Involvement (PPI) who has "attacked doctors for their failure to cooperate with the government's goal to give patients copies of clinician's letters about them".5 The national consultation on patient choice highlighted ‘need for information’ as one of four themes, and recognised that this had implications not only for patients but also for clinicians, and for their accountability.21
So back to copying letters—will it happen? The debate that has been focused around whether it should be ‘good practice’ or required as part of a formal set of targets is now resolved. The BMA had made it clear that they would prefer a "best practice approach rather than insistence on this measure via regulation",5 and this was reflected in statements from the DoH in March 2004: "copying letters is not new ... [it is a] simple way of keeping people up to date about their treatment".3 In the primary care context, it is now clear that it will not be ‘required’, which could be seen as appearing to ‘break the pledge’ of the NHS Plan.3 However, the old adage ‘what gets measured gets done’ is still on the minds of some; "criteria attached to the ‘patient focus’ domain within the new NHS standards ... provide an opportunity to introduce new levers on copying letters".5
It would clearly be unfair to suggest that doctors are unwilling to provide information to patients, but the practicalities of doing this through copying letters, when there are so many other demands on their time, mean that this appears at times to be given a relatively low priority. Although "where professionals profess scepticism about change we may be sure that in part, at least, this has to do with defending territories ... no matter what the evidence says",22 it does seem that resistance from clinicians has been successful in stalling the full implementation of the copying letters proposal. So it will not happen in full—but this does not alleviate the wider concerns about information sharing that have been voiced by clinicians and which will still impact on the implementation of the NPfIT as well as other PPI initiatives. Such issues are not likely to go away.
Throwing the ‘baby out with the bathwater’ may however be premature—there is useful learning from the issues raised by the partial implementation of copying letters to patients for PPI and IT implementation, which are recognised as requiring a ‘culture change’:23 "The most significant obstacle in similar projects has been the lack of attention to the human element of changing behaviour" (Halligan quoted in23). If the government is serious about providing more information to patients, then copying letters may be a useful way of facilitating that process of culture change, as well as addressing some of the objections to the principles of more information sharing. Otherwise patients will have to wait for the future provision of information supported by technology, once the clinicians have again debated the same issues about information sharing and its implications. Whether this will ever happen is a subject for a separate debate.
Declaration
Funding: the authors received funding from the Department of Health during 2002 to carry out the evaluation of the ‘Copying Letters to patients’ pilot projects. Their final report to the DoH has not been made public, but their summaries of each of the pilots are available (http://www.dh.gov.uk/assetRoot/04/02/04/49/04020449.pdf). The views expressed in this paper, and the evidence to support them, has been gathered by analysis of relevant publicly available literature. The views were developed from knowledge gained by involvement in the evaluation but are those of the authors alone.
Ethical approval: n/a.
Conflicts of interest: Ruth Boaden is a Non-Executive Director of Pennine Acute Hospitals NHS Trust. Drs Boaden and Harris are both working on a variety of research projects funded by the NHS but are not directly employed by them.
References
1 Department of Health. The NHS plan: a plan for investment a plan for reform. London: Department of Health; 2000.
2 Department of Health. Copying letters to patients: good practice guidelines. London: Department of Health; 2003. http://www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/PatientAndPublicInvolvement/CopyingLettersToPatients/CopyingLettersToPatientsArticle/fs/en?CONTENTID=400043|&chk=Tia2zO (accessed 18 Nov 2004)
3 Middlemiss P. DoH reverses proposal to copy patient letters. Gen Pract 2004; 15: 5.
4 Chantler C, Johnson J. Patients should receive copies of letters and summaries. Br Med J 2002; 325: 388.
5 Donnelly L. Cayton slams GPs for stalling on patient letters. Health Serv J 2004; 114 (5903): 3.
6 Yoxall H. Somerset LMC Newsletter. Taunton; 2003. http://www.somersetlmc.demon.co.uk
7 Department of Health. Frequently asked questions—copying letters. London: Department of Health; 2003. http://www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/PatientAndPublicInvolvement/CopyingLettersToPatients/CopyingLettersToPatientsArticle/fs/en?CONTENT_ID=4079413&chk-nXK57f (accessed 18 November 2004).
8 Health and Social Care Act. http://www.legislation.hmso.gov.uk/acts/acts2001/2001/0015.htm (accessed 18 Nov 2004) 2001.
9 Data Protection Act. 1998. http://www.hmso.gov.uk/acts/acts1998/80029k.htm#75 (accessed 18 Nov 2004).
10 Access to Medical Records Act. 1988. http:/www.hmso.gov.uk/acts/acts1988/Ukpga_19880028_en_1.htm (accessed 18 Nov 2004).
11 Jelley D, Walker C. Copying clinical letters: access issues for specific patient groups. Qual Primary Care 2003; 11: 215–220.
12 Essex C. Copying letters to patients is coming to a clinic near you. Br Med J 2003; 326: 1330–1331.
13 White P, Singleton A, Jones R. Copying referral letters to patients: the views of patients, patient representatives and doctors. Patient Education and Counselling. 15: 94–98.
14 Hamilton W, Round A, Taylor P, Waterston T, Humfress H, Schmidt U. Dictating letters in front of the patients. Br Med J 1997; 314: 1416.
15 Jelley D, Walker C. Sharing information with patients. In Harrison J, Innes R, van Zwanenberg T (eds). Rebuilding Trust in Healthcare. Oxford: Radcliffe Medical Press; 2003.
16 Cayton H. Copying letters to patients. Speech given on 5 November 2002. http://www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/PatientAndPublicInvolvement/CopyingLettersToPatients/CopyingLettersToPatientsArticle/fs/en?CONTENT_ID-4000427&chk-oxhmfY (accessed 8 June 2004)
17 Griffiths P. Significant resource implications. In Br Med J rapid response service; 2002. http://bmi.bmijournals.com/cgi/content/full/325/7360/388/a (accessed 4 Feb 2004).
18 Department of Health. The NHS Improvement Plan: Putting people at the heart of public services. London: Department of Health; 2004.
19 NHS Confederation. Joining up the jigsaw. London NHS Confederation; 2003.
20 Department of Health Standards for Better Health, Gateway ref 3528, London: Department of Health; 2004. http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=40866.65&chk=jXDWU6 (accessed 18 Nov 2004).
21 Smith P. Cayton: ‘four themes pinpoint demand’. Health Serv J 2003; 113: 6–7.
22 Bury M. Researching patient–professional interactions. J Health Serv Res Policy 2004; 9 (suppl 1): 48–54.
23 Collins T. NHS leader sees culture change as key to project. Computer Weekly 20 April 2004.
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