Dr Natalie Joseph-Williams, Dr Leigh Sanyaolu, and Professor Adrian Edwards summarise the NICE recommendations on shared decision making
Read this article to learn more about:
- the principles of shared decision making, and how it can be used to empower patients
- practical advice on planning and implementing shared decision making in primary care
- how shared decision making supports other key national initiatives and guidelines.
Read this article online at: GinP.co.uk/456228.article
After reading this article, ‘Test and reflect’ on your updated knowledge with our multiple-choice questions. We estimate that this activity will take you 30 minutes—worth 0.5 CPD credits.
In June 2021, NICE published its new guideline on shared decision making.1 Shared decision making is a collaborative process that involves a person and their healthcare professional working together to reach a joint decision about immediate or future care.1 It is widely accepted as a core feature of good healthcare, and is a key pillar of the NHS Constitution for England: ‘The patient will be at the heart of everything the NHS does … Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment.’ 2 Shared decision making also underpins evidence-based care, ensuring that clinical decision making is based on the best available evidence, clinical experience, and patients’ preferences and values (see Figure 1).1
This joint process empowers people to make decisions about the care that is right for them at that time, and includes the option to not have any treatment or to continue with current treatment.1
Although shared decision making is widely encouraged, there has been a lack of practical guidance on how to make it part of routine healthcare. In response, NICE has developed a guideline with advice on incorporating shared decision making into everyday practice across all healthcare settings.1 This article summarises these recommendations, and discusses their implications for primary care.
The new guideline makes four sets of recommendations for embedding shared decision making in practice,1 which are described in turn in the following sections.
1. Putting shared decision making into practice
The guideline outlines several key steps that primary care teams and professionals should do before, during, and after shared-decision making discussions with patients.1
Figure 23,4 maps a primary care clinical scenario (options around antibiotic prescribing for recurrent urinary tract infection [UTI]; see Box 1) to the recommendations. This hypothetical primary care scenario demonstrates a shared-decision making discussion on the benefits and risks of taking or not taking long-term antibiotics for recurrent UTI. We chose this scenario because it is topical, and it aligns with NICE Guideline 15 on antimicrobial stewardship, which aims to change prescribing practice to slow the emergence of antimicrobial resistance and ensure that antimicrobials remain an effective treatment for infection.5 Figure 2 outlines the key steps at each stage of this primary care decision, and provides further good practice points.3,4
Box 1: Clinical scenario—options around antibiotic prescribing for recurrent UTI
‘Ms James is a 37-year-old woman who has been seen on a number of occasions with UTIs. She has been under the care of the Urology Department and had a normal cystoscopy and ultrasound scan of her kidney, ureters, and bladder. She has been diagnosed as having recurrent UTIs and, at her last hospital consultation, the consultant discussed the possibility of starting long-term antibiotics. The patient was unsure about starting these at the time, and has now made an appointment with you to discuss this further.’
UTI=urinary tract infection
2. Using patient decision aids
The guideline recommends the use of quality-assured patient decision aids (PDAs) as part of the ‘toolkit’ to support the shared-decision making discussion.1 PDAs are tools that support people to make values-based decisions with their healthcare professional; they state the decision that needs to be made, describe the likely risks, benefits, and consequences of each option, and help people to weigh them up and make a decision.6 They move beyond traditional patient information leaflets, which provide information about the options, by encouraging patients to think about what the options mean in light of what matters to them.
PDAs come in various formats (for example, online, on paper, phone apps). Sometimes PDAs include exercises and prompts that encourage patients to write down what their preferences and values are, so that they can share them with their healthcare professional. Depending on the decision that is being made, they can be given to the patient before, during, or after the healthcare consultation. However, these tools are designed to support shared decision making alongside other skills and interventions,1 rather than to replace shared discussions with patients. Shared decision making can be undertaken without a tool, but it cannot be done without a shared discussion in which options and preferences are shared between a healthcare professional and a patient.
NICE Guideline 197 states that a PDA should only be used if it is:1
- quality assured and reflects evidence-based best practice
- relevant to that discussion and the decision that needs to be made
- relevant to that clinical setting.
To help with this, NICE has also published a Standards Framework for shared-decision making support tools, including PDAs,7 alongside the shared-decision making guideline.1 This framework helps people making or using PDAs to assess their usefulness and quality, and is divided into two sets of standards: those that evaluate the content of the PDA, and those that assess the development processes (see Figure 3).7 In the absence of a current national repository, organisations are encouraged to consider ways of providing staff with access to quality-assured PDAs that have been assessed against this framework. In primary care, the GP federation, network, or cluster can support practices to identify these tools for use with their patients. An example of an international repository is The Ottawa Hospital Research Institute’s Alphabetical list of decision aids by health topic, which includes over 170 PDAs, many of which are freely available (bit.ly/3AzmI7G).
3. Communicating risks, benefits, and consequences
The guideline also offers advice on how risks, benefits, and consequences should be presented to patients.1 These should be in the context of each person’s life and what matters most to them, and personalised as much as possible.1 When personalised risk information is not available in existing PDAs, clinical calculators may help to inform these discussions. An example would be patients with atrial fibrillation weighing up the risks and benefits of receiving anticoagulation. The CHA2 DS2 -VASc tool (bit.ly/3iIE4sY) can be used to provide the patient with information about their risk of stroke and to discuss the potential benefits of anticoagulation in reducing this risk, and the ORBIT Bleeding Risk Score (bit.ly/3CHI70t) can be used alongside this to discuss the risk of bleeding with anticoagulation. However, personalised information is not always available and, in these situations, healthcare professionals should explain how general information about risks, benefits, and consequences relates to the patient.1
People can only make informed decisions if they are given enough information to do so, and people’s interpretation of risks, benefits, and consequences fundamentally reflects their values and priorities.1 As such, the guideline makes specific recommendations on how numerical information should be presented to minimise bias (see Box 2).1
Box 2: Discussing numerical information as part of communicating risks, benefits, and consequences1
- Think about using a mixture of numbers and pictures—for example, numerical rates along with pictograms or icon arrays—to allow people to see both positive and negative framing at the same time
- Use numerical data to describe risks, if available; be aware that people interpret terms such as ‘risk’, ‘rare’, ‘unusual’, and ‘common’ in different ways
- Use absolute risk rather than relative risk; for example, the risk of an event increases from 1 in 1000 to 2 in 1000, rather than the risk of the event doubles
- Use natural frequencies (for example, 10 in 100) rather than percentages (10%)
- Be consistent when using data; for example, use the same denominator when comparing risk: 7 in 100 for one risk and 20 in 100 for another, rather than 1 in 14 and 1 in 5
- Present a risk over a defined period of time (months or years), if relevant; for example, if 100 people have treatment for 1 year, 10 will experience a given side effect
- Use both positive and negative framing; for example, treatment will be successful for 97 out of 100 people, and it will be unsuccessful for three out of 100 people.
© NICE 2021. Shared decision making. Available at: www.nice.org.uk/ng197
All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.
4. Supporting uptake of shared decision making in primary care organisation
The guideline recommends several things that primary care organisations can do to support healthcare professionals to undertake shared decision making with patients.1 Dedicated and accountable high-level leadership is required,1 through which the GP federation, network, or cluster can drive planning, training, and implementation. The senior leadership team should also include a ‘patient director’, who will work with the leader to raise the profile of the patient voice in planning, implementing, and monitoring shared decision making, and support the embedding of shared decision making at the highest level of the organisation.1
Co-production is essential at this level—working together to identify what shared decision making should look like for particular patients and professional groups. The leadership team should be supported by a range of senior healthcare professional ‘champions’ (for example, GPs, nurse practitioners, pharmacists, or practice nurses) and ‘service user champions’ (for example, users of primary care services).1
Several key activities are included in this recommendation, as detailed in the following sections.
Planning and implementing shared decision making
A good starting point is to assess existing best practice and establish any knowledge and experiences that may help to inform the local improvement plan;1 for example, community pharmacists already undertake shared-decision making discussions with patients during medication reviews in relation to medicines optimisation.8,9 Specific support networks can be set up to facilitate shared learning, or they can be built into existing local and regional networks.1
A key next step is to establish the specific priority areas and teams in which shared decision making should be embedded—start with the easiest topics and most enthusiastic teams first, and continue the approach across other areas.1 Examples of areas of primary care in which shared decision making has become routinely embedded include: female contraceptive options; the decision to take statins for high cholesterol; direct oral anticoagulant decisions for atrial fibrillation (see also:Individualise care for the management of atrial fibrillation); prostate-specific antigen testing for prostate cancer; and treatment selection for carpal tunnel syndrome.
Whenever possible, build upon existing initiatives that complement shared decision making (such as personalised care planning,10 self-management support,11 and social prescribing12), aiming for synergy rather than duplication. This plan should also include internal and external monitoring activities—how will you demonstrate improvements, and how will you feed this information back to staff, management, and patients?1
Good shared decision making relies on a joined-up approach, where patients receive consistent information throughout their care journey.1 Continuity and consistency of care relies on the ability to effectively share information and expertise within and between organisations.1 The plan should consider whether the existing primary care information infrastructure can be used to support shared decision making. For example, can practice information technology systems integrate high-quality PDAs (see NICE Guideline 197 recommendation 1.3—Patient decision aids) so that they are readily accessible during a consultation?1 And can patients’ medical records be amended to include details of past decisions, personal preferences, information format preferences (for example, paper or electronic), and other relevant information gathered in previous discussions?
Supporting healthcare professionals’ skills and competencies
All healthcare staff should be able to access training, so that they can gain knowledge and develop skills to support shared decision making.1 Training should be practical rather than theoretical, and ‘train the trainer’-style workshops will help to cascade skills to more teams in a sustainable way.1 Training can also be incorporated into continuing professional development programmes and appraisal resources. Accordingly, NICE has produced the accompanying free-to-access Shared decision making learning package for healthcare professionals (bit.ly/3gjdXav).
Promoting shared decision making to people who use services
It is important that patients are aware of shared decision making, understand that their input in decision making is valued, and feel prepared to take part in shared discussions. Patients should be prompted to ask questions such as:1
- What are my options?
- What are the possible benefits and risks of those options?
- How can we make a decision together that is right for me?
Various formats can be used to share these messages, including posters, leaflets, and digital signage in waiting and clinical areas, messages on practice websites, social media communications, and appointment letters and alerts. Participation in shared decision making should also be actively encouraged by the healthcare professional.1 Figure 4 provides some examples of UK patient-targeted materials aimed at promoting shared-decision making.13–15
How do shared-decision making recommendations support other programmes and guidelines?
As with many approaches that the health service is trying to embed into routine practice, there is overlap with other key policies, guidelines, and priorities. This is not an exhaustive mapping exercise, but in the following sections we briefly summarise how shared decision making can support other key national initiatives and guidelines.
Universal personalised care (England)
Shared decision making is a core component of universal personalised care, a programme aimed at giving people more choice and control over their mental and physical health based on what matters to them and their individual strengths, needs, and preferences.16 Personalised care is broader than shared decision making alone, incorporating the development of personalised care plans and enabling choice, social prescribing and community-based support, and supported self-management;16 shared discussions, which encourage sharing of information between healthcare professionals and patients, can underpin and support all of these activities.
Medicines optimisation and adherence
Fundamentally, medicines optimisation8,9 and adherence17 guidance ensures that the right patients get the right choice of medicine at the right time. Recommended by NICE9,17 and the Royal Pharmaceutical Society,8 undertaking medicines optimisation and addressing adherence to treatment are patient-focused approaches that encourage an open, honest, and collaborative partnership between healthcare professionals and patients. When a patient is offered a medication as a treatment choice, they must be fully informed about the risks and benefits in a way that means something to them personally,8,9 and when a patient is not taking their medication, we should take steps to understand the patient’s experience and see if we can support them or provide alternatives that fit better with their preferences.17 Shared-decision making approaches and PDAs, as recommended by NICE Guideline 1971 and described in this article, can be used to support these discussions.
Multimorbidity: clinical assessment and management
NICE Guideline 56 focuses on optimising care for adults with multiple long-term conditions by reducing treatment burden and improving quality of life.18 A key activity is establishing the patient’s goals and priorities, and what is most important to them.18 Is it maintaining their independence, being able to work, taking part in social activities and playing an active part in family life, preventing specific adverse outcomes, reducing harms from medications, or something else?18 When a patient is taking multiple medications for several conditions, it is important not only that the benefits of existing treatments are maximised, but also that we identify treatments that can be stopped because they are of limited benefit to the patient.18 This can only happen if there is a shared understanding between the healthcare professional and the patient, and when the patient is understood as an individual, as supported by shared decision making.18
When we conduct training sessions with practitioners, we frequently encounter the same concerns. Using our experience of working with teams to provide skills training and embed shared decision making, we have provided some thoughts on these and how they can be overcome (see Figure 5).19
The NICE shared-decision making guideline makes four sets of recommendations for incorporating shared decision making into routine healthcare. This article provides practical guidance on what this may look like in primary care, and how to overcome some of the key implementation challenges. If these challenges can be overcome and shared decision making is embedded into everyday practice, patients will be empowered to participate in decisions about their care, and identify what is most important to them and their situation. This will benefit patients, clinicians, and the health service.
- Primary care is uniquely placed to promote and provide shared decision making to patients
- primary care is the main point of contact for most patients
- strong patient partnerships with continuity are typically formed in primary care
- primary care provides long-term follow up and coordination across a patient’s healthcare journey
- shared decision making in primary care can raise patients’ expectations of being involved across other care pathways once they are referred
- Healthcare professionals must gain the skills and confidence to incorporate shared decision making into routine practice, and actively encourage patients to participate; leadership from primary care organisations is also required to support and promote the uptake of shared decision making
- Shared decision making can be undertaken without a PDA, but it cannot be done without the skills to have a shared discussion in which options and preferences are shared between a healthcare professional and a patient
- PDAs should only be used if they are quality assured, reflect evidence-based practice, and are relevant to the decision being made and the clinical setting
- To minimise bias, consideration should be given to how risks, benefits, and consequences are presented.
PDA=patient decision aid
Implementation actions for STPs and ICSs
written by Dr David Jenner, GP, Cullompton, Devon
The following implementation actions are designed to support STPs and ICSs with the challenges involved in implementing new guidance at a system level. Our aim is to help you to consider how to deliver improvements to healthcare within the available resources.
- Consider how best to promote the use of shared decision making in your area for every aspect of a patient’s care across the healthcare pathway
- Be realistic about the time, staff, and operational constraints to implementing this guidance in a pandemic and at a time of unprecedented NHS demand
- Identify PDAs that meet the standards that NICE sets for their use, and publish them on a website that can be accessed by both patients and healthcare staff
- Assess the realistic limitations of PDAs in patients with multiple comorbidities and ensure, where possible, that sufficient time is available for discussions with patients about complex decisions
- Consider developing an online educational program capturing the key principles for shared decision making, and encourage staff to build this into their personal development plans and annual appraisal.
STP=sustainability and transformation partnership; ICS=integrated care system; PDA=patient decision aid
Dr Natalie Joseph-Williams
Senior Lecturer in Improving Patient Care, Division of Population Medicine, Cardiff University
Dr Leigh Sanyaolu
National Institute for Health Research Clinical Lecturer, Division of Population Medicine, Cardiff University; Salaried GP, Cwmbran
Professor Adrian Edwards
Professor of General Practice, Division of Population Medicine, Cardiff University; Salaried GP, Cwmbran
The guideline referred to in this article was produced by the National Guideline Centre for NICE.
The views expressed in this article are those of the authors and not necessarily those of NICE.
NICE. Shared decision making. NICE Guideline 197. NICE, 2021. Available at: www.nice.org.uk/ng197
After reading this article, ‘Test and reflect’ on your updated knowledge with our multiple-choice questions. We estimate that this activity will take you 30 minutes—worth 0.5 CPD credits.
- NICE. Shared decision making. NICE Guideline 197. NICE, 2021. Available at: www.nice.org.uk/ng197
- Department for Health and Social Care. The NHS Constitution for England. London: DHSC, 2021. Available at: www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england
- NICE. Decision aid—reducing the chance of recurrent urinary tract infection (UTI) in premenopausal women who are not pregnant. NICE, 2018. Available at: www.nice.org.uk/guidance/ng112/resources/decision-aidreducing-the-chance-of-recurrent-urinary-tract-infection-uti-in-premenopausal-women-who-are-not-pregnant-pdf-6600984157
- NICE. Urinary tract infection (recurrent): antimicrobial prescribing. NICE Guideline 112. NICE, 2018. Available at: www.nice.org.uk/guidance/ng112
- NICE. Antimicrobial stewardship: systems and processes for effective antimicrobial medicine use. NICE Guideline 15. NICE, 2015. Available at: www.nice.org.uk/ng15
- International Patient Decision Aid Standards Collaboration website. What are patient decision aids? ipdas.ohri.ca/what.html (accessed 25 August 2021).
- NICE. Standards framework for shared-decision-making support tools, including patient decision aids. Evaluation Consultation Document 8. NICE, 2021. Available at: www.nice.org.uk/corporate/ecd8/resources/standards-framework-for-shareddecisionmaking-support-tools-including-patient-decision-aids-pdf-1124019137221
- Royal Pharmaceutical Society. Medicines optimisation: helping patients to make the most of medicines—good practice guidance for healthcare professionals in England. London: RPS, 2013. Available at: www.rpharms.com/Portals/0/RPS%20document%20library/Open%20access/Policy/helping-patients-make-the-most-of-their-medicines.pdf
- NICE. Medicines optimisation: the safe and effective use of medicines to enable the best possible outcomes. NICE Guideline 5. NICE, 2015. Available at: www.nice.org.uk/ng5
- Coulter A, Entwistle V, Eccles A et al. Personalised care planning for adults with chronic or long-term health conditions. Cochrane Database Syst Rev 2015; (3): CD010523.
- Davies F, Wood F, Bullock A et al. Shifting mindsets: a realist synthesis of evidence from self-management support training. Med Educ 2018; 52 (3): 274–287.
- Wallace C, Stone J, Rees S. Social prescribing: how to create a sustainable journey? www.iwa.wales/agenda/2018/10/social-prescribing-how-to-create-a-sustainable-journey/ (accessed 25 August 2021).
- Advancing Quality Alliance. Shared decision making: ask 3 questions. London: AQA, 2020. Available at: aqua.nhs.uk/wp-content/uploads/2020/12/AQuA-A3Q-Poster-1.pdf
- Improvement Cymru. Making choices together: ask 3 questions. twitter.com/improvementcym/status/1092808315007045634 (accessed 18 August 2021).
- Choosing Wisely UK. Shared decision making resources: making the most of your appointment using BRAN. Patient poster. London: Choosing Wisely UK, 2020. Available at: www.choosingwisely.co.uk/shared-decision-making-resources/making-the-most-of-your-appointment-using-bran-poster-for-patients/
- NHS England Personalised Care Group. Universal personalised care—implementing the comprehensive model. London: NHSE, 2019. Available at: www.england.nhs.uk/wp-content/uploads/2019/01/universal-personalised-care.pdf
- NICE. Medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence. Clinical Guideline 76. NICE, 2009. Available at: www.nice.org.uk/cg76
- NICE. Multimorbidity: clinical assessment and management. NICE Guideline 56. NICE, 2016. Available at: www.nice.org.uk/ng56
- Elwyn G, Frosch D, Thomson R et al. Shared decision making: a model for clinical practice. J Gen Intern Med 2021; 27 (10): 1361–1367.