Implementing shared decision making in the NHSBMJ 2010; 341 doi: https://doi.org/10.1136/bmj.c5146 (Published 14 October 2010) Cite this as: BMJ 2010;341:c5146
- Glyn Elwyn, professor1,
- Steve Laitner, associate medical director2,
- Angela Coulter, director of global initiatives3,
- Emma Walker, head of service development4,
- Paul Watson, chief executive5,
- Richard Thomson, professor6
- 1Department of Primary Care and Public Health, Cardiff University, Cardiff CF14 4Y, UK
- 2NHS East of England, Cambridge, UK
- 3Foundation for Informed Medical Decision Making, Boston, MA, USA
- 4NHS Direct, London, UK
- 5NHS North-East Essex, Clacton-on-Sea, Essex, UK
- 6Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
- Correspondence to: G Elwyn
- Accepted 25 July 2010
Policies to promote shared decision making are becoming prominent in the United States, Canada, and United Kingdom.1 2 3 This is partly because of a recognition of the ethical imperative to properly involve patients in decisions about their care4 5 and partly because of the accruing evidence that the approach has benefits.6 Shared decision making is an approach where clinicians and patients make decisions together using the best available evidence. Patients are encouraged to think about the available screening, treatment, or management options and the likely benefits and harms of each so that they can communicate their preferences and help select the best course of action for them. Shared decision making respects patient autonomy and promotes patient engagement.
Despite considerable interest in shared decision making, implementation has proved difficult and slow.7 At least three conditions must be in place for shared decision making to become part of mainstream clinical practice: ready access to evidence based information about treatment options; guidance on how to weigh up the pros and cons of different options; and a supportive clinical culture that facilitates patient engagement. This article outlines some options for creating a sustainable decision support platform for patients that may facilitate a wider adoption of shared decision making in clinical practice.
Interventions to support patient decisions, often called decision aids, have been developed to provide evidence based information to patients.8 These tools are usually designed for situations where there is some uncertainty about the best treatment option and provide information about the harms and benefits in as balanced a way as possible. Some tools are short and can be used in consultations9; others are longer, such as DVDs, booklets, or web tools that patients use before consulting a clinician.
Decision aids are appropriate when more than one course of action is feasible (clinical equipoise) and where the best decision depends on the patient’s reaction to the outcome probabilities. These are known as “preference sensitive” decisions.10 Examples include breast conservation surgery or mastectomy in early breast cancer, treatments for benign prostatic hypertrophy or menorrhagia, and managing knee osteoarthritis.
Evidence of benefit
A large number of decision aids are now available, most of which were developed in North America. The latest iteration of the Cochrane systematic review includes 55 trials6 and provides evidence that patients who have used these tools are better informed (mean difference 15.2/100 95% confidence interval 11.7 to 18.7) and less passive in decision making (relative risk 0.6, 0.5 to 0.8). There is some evidence that when patients have made well informed decisions, they also adhere better to treatment regimens11 and that when informed patients face discretionary surgery, they make more conservative decisions, often deferring or declining interventions (relative risk 0.8, 0.6 to 0.9).6 These effects seem to be strengthened when patients are given decision coaching (a brief discussion with a trained facilitator) to help them with the process of deliberation.12 13
In short, there is consistent evidence that decision support interventions designed for patients ensure that the ethical imperative of informed patient choice and consent is met, with a range of benefits for patients. In some examples, especially where there are choices between more and less invasive options, these may lead to cost reductions; the Cochrane review of decision aids found that, in some contexts, they could reduce rates of elective surgery by 25%. This means that the NHS might be able to save considerable amounts if shared decision making, supported by decision support, could be achieved before common elective surgical procedures. Shared decision making might also reduce the likelihood and cost of litigation, although there is no formal evidence for this yet.
Putting tools into practice
The pioneer in setting up an organisation based system for implementing shared decision making is the Dartmouth-Hitchcock Medical Center in New Hampshire, which is linked to Dartmouth College. Eleven years ago, it started using decision support tools produced by the Foundation for Informed Decision Making in Boston for a few important areas such as breast cancer, orthopaedics, and urology. Today, its Shared Decision Making Center has over 30 DVD based patient decision support tools.14 Many of the centre’s clinicians have integrated these tools into their workflows and electronic records, reporting that consulting with patients after they have had an opportunity to use the tools enhances the clinical encounter.
Since its launch in 1999, the centre has loaned 24 750 video, paper, and electronic decision aids for use by patients and review by clinicians. Despite its local success, the centre remains unique in the United States, although other implementation projects are in progress in primary care and other settings.
The NHS has a longstanding interest in decision aids and has invested in piloting and adapting the tools developed by the Foundation for Informed Decision Making for prostate cancer, benign prostatic hypertrophy, and osteoarthritis of the knee.15 Anglicised adaptations of the DVDs and patient booklets have been distributed to urology departments throughout England, and the programme is being publicised at conferences and specialty meetings. In addition, the NHS Screening and Cancer Screening Programmes and Cancer Research UK have worked with the decision laboratory at Cardiff University to develop web based decision support for patients considering being tested for prostate specific cancer antigen (Prosdex, www.prosdex.com 16) or facing a decision whether to have mastectomy or breast conserving surgery (Bresdex, www.bresdex.com). These initiatives are important, but the tools are not sufficient on their own. The next challenge is how to embed shared decision making and the use of patient decision support in the fabric of the NHS.
The Health Foundation has funded a programme to learn more about how to achieve a wider implementation of shared decision making.17 This initiative coincides with the efforts by the East of England Strategic Health Authority, commissioned by the Department of Health, to accelerate the adoption of patient decision support as a means of implementing shared decision making. The health authority has commissioned NHS Direct to pilot three web based patient decision support tools. The decision aids, produced originally by the Foundation for Informed Decision Making, have been adapted for online use by patients with osteoarthritis of the knee, benign prostatic hypertrophy, and prostate cancer. Eight NHS pilot sites have been chosen and asked to identify patients who have been referred for specialist advice and who are at key treatment decision points. These patients are asked to access the interactive web based decision support system before they attend their outpatient appointment so that they are better informed (figure⇓). Patients who do not have access to the internet are provided with a telephone number for information advisers at NHS Direct, who will also post them a copy of equivalent information. While using the interactive system, patients are asked to complete a survey to gauge the severity of their symptoms and their initial treatment preferences. This is summarised and available to them and their clinician at a later date. The logistics, feasibility, and effect of this approach are being evaluated.
For conditions that can be diagnosed reliably in general practice, it might be more appropriate to make patient decision support available before referral, perhaps by embedding them in primary care electronic health record systems. Providers of supplementary information, such as the Map of Medicine, could provide decision support for patients alongside the evidence based decision support they provide for clinicians. For other health problems where self care is a feasible option, information providers such as NHS Choices could include decision support in their public facing websites. Commissioning consortiums might want to ensure that decision coaching is provided as part of telecare services for people with long term conditions. Together, these various means could make patient decision support readily available for a wide range of topics.
Although it is clear that patients desire and value information about treatment choices,18 19 it is difficult to embed the attitudes, skills, and interventions into routine practice.7 Many barriers are cited, including concerns about insufficient time and lack of fit into organisational routines. Professionals often claim that there is no need for this approach because shared decision making already occurs,7 but the available evidence contradicts this assertion.20 21 The latest results from the Care Quality Commission’s national patient surveys show that 48% of inpatients and 30% of primary care patients would have liked more involvement in decisions about their care.19
Research on shared decision making has focused mostly on the creation of tools to support patient involvement in decisions and much less on how to create a culture where professionals espouse shared decision making as a skill and routinely use these tools. Achieving this aim will require multiple approaches, including strategies such as social marketing, engagement of clinical champions, support from other organisational leaders, and measurement that focuses on relevant aspects of patients’ experience such as their degree of deliberation and attainment of skills in shared decision making.
Challenges to implementation
Substantial challenges still need to be met. Producing and updating decision support for patients is expensive: it requires meticulous attention to the accuracy of evidence as well as designing information that is easily understood by patients with different backgrounds and literacy levels. Adapting tools rather than re-inventing would be wise for the NHS given the time and resources required. Tools should meet a quality standard, and a process to assess quality will be required.22
Perhaps the biggest challenge is to ensure that decision support materials are accessible to both patients and clinicians and that they fit into clinical workflows.23 This is important because these tools give clinicians access to summarised evidence about the harms and benefits of options just as much as they provide it to patients. Tools that provide short summaries for use in clinical encounters alongside longer sources of information that patients can access at home may be more readily adopted by clinicians.8
Building patient decision support into the NHS will require substantial investment and a collaboration between many agencies. Many of the building blocks are in place. High quality decision aids for many conditions already exist, although it would also be necessary to establish a system for regular review and updating. The results of the NHS Direct pilot will show whether it is possible to build systems that provide useful links between frontline NHS clinics and tools that are hosted online. Success will require strong strategic leadership, commissioning of high quality content, and the provision of sustained funding to host these resources using computerised, online, or telephone supported channels. If such a platform could be created, it would go a long way towards developing a patient led revolution in health care—one that is fuelled by evidence.
Cite this as: BMJ 2010;341:c5146
We thank Catherine Clay, Sam Hudson, and J Muir Gray for their comments and guidance.
Contributors and sources: The authors are engaged in research on the development of shared decision making and the implementation of patient decision support. GE, AC, and RT are members of the International Patient Decision Aids Collaboration. This article arose from discussions about the development of a web based patient decision support in the NHS. GE and SL initiated the article. All the authors were involved in drafting the article, revising it critically for intellectual content. GE is the guarantoror.
Competing interests: All authors have completed the unified competing interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare no support from any organisation for the submitted work; RT has been paid for a lecture by the organising committee of the shared decision making international joint health care conference 2010 and has a number of projects related to shared decision making funded by the government and the Health Foundation; AC has done consultancy for the Foundation for Informed Medical Decision Making; GE has been awarded a grant for evaluation of an NHS Direct shared decision making project and developed PDAs that NHS Direct is considering hosting on its web platform; SL has done consultancy work on shared decision making for Hertfordshire PCT, NHS Institute and NHS Direct, is part time employed as national clinical lead for shared decision making by the Department of Health, has received payment for lectures, and is medical director of Pathways for Health, which has been used to map shared decision making interventions across a pathway of care. PW, EW, AC have no non-financial interests that may be relevant to the submitted work. RT and GE lead a Health Foundation funded project concerned with implementing shared decision making in practice; SL is a salaried general practitioner.
Provenance and peer review: Not commissioned; externally peer reviewed.