We’re pleased to share the recording of our event, Shared decision making: a reality for everyone?, which took place on 24^th November 2021.

Also available are the panel's presentations, and we are grateful to our speakers for allowing us to share their slides. If you use any of the information from the presentations, please make sure to credit the individual panellists and their organisations, if applicable.

Also, you may like to read our report on shared decision making, Shared decision making: shared reality or insider jargon? In it,we discuss barriers to shared decision making and put forward a number of recommendations aimed at improving the practice of shared decision making.

What is shared decision making?

Shared decision making describes the way in which patients and their healthcare providers work together to decide treatment, management or self-management support goals. It includes sharing information about a patient’s options and preferred outcomes. The goal is for patient and professional to agree treatment, or no treatment.

Shared decision making means patients can express their values, beliefs and goals for their healthcare, and work with clinicians and professionals to reach decisions that reflect them.

It is an approach that has been shown to bring benefits for patients and the healthcare system. For the Patients Association, our commitment to patient partnership at every level makes shared decision making an approach of central interest to us: it enables true patient partnership in individual care and treatment decisions.

Questions and answers from our November event

1. Is shared decision making the correct term to use?

In our report, Shared decision making: shared reality or insider jargon? we used the following definition of shared decision making: “A process in which clinicians and patients work together to clarify treatment, management or self-management support goals. It includes sharing information about options and preferred outcomes with the aim of reaching mutual agreement on the best course of action.” Following this approach should mean that patients have the opportunity to express their values, beliefs and goals for their healthcare, and work with clinicians and professionals to reach decisions that reflect them.

But as our event showed, the very phrase ‘shared decision making’ is not universally popular. Shortly before our event, the Association for Improvements in the Maternity Services (AIMS)  published a paper arguing that

“the terminology of ‘shared decision making’ should be relegated to ‘the back office’ of the NHS”.

The reasons for this are that it muddles what the roles of patient and healthcare professional are and can obscure the legal basis of decision making. For AIMS, supported or informed decision making are better ways of describing how healthcare professionals and patients can work together.

As always in healthcare, it is impossible to find language that absolutely everyone is happy with. If we were to change from ‘shared decision making’ to something else, somebody would find the new term objectionable in some way. For now, while we recognise that not everyone is happy with it, we will continue to use the term ‘shared decision making’, which is recognised and understood extremely widely.

2. Does the culture of the NHS facilitate or work against greater adoption of shared decision making?

In our report we identified two key issues within the NHS that were barriers to the greater adoption of shared decision making. These were time and leadership. Time emerged as a barrier to patients and healthcare professionals' ability to work together. We would like to see research into this to establish if practising shared decision making in a consultation does take more time than other styles of appointment.

During our research, our focus group participants felt that, done properly – that is, patients are provided with information and are able to pull together questions they want to ask their professional – consultations that practised shared decision making need not necessarily take longer, and should be achievable within scheduled appointments. But there is no authoritative research that answers this question either way.

The issue of the NHS’s culture is important: the system is not built around shared decision making. It is not the default approach to care, and no one in a leadership position is clearly responsible for ensuring that clinicians practice it. Where it is practised at a local level, strong leadership from senior clinicians is important. Where this leadership is absent, clinicians and professionals, across different teams and pathways, do not have a shared understanding of shared decision making, making it difficult to achieve.

3. How can we involve more patients in shared decision making?

Dr Alex Freeman, one of the speakers at our event, believes patients should part of the design of services.

“No service can be designed without co-production with its users, and patients/carers are half the users of shared decision making.”

The Winton Centre has been working on ways to get patients more involved. “We have been thinking about this a bit in the Winton Centre. At the moment we are getting the decision aids together in printed form and in English (plain English, and in appropriate fonts etc), but if there were resources to translate into different languages and different formats (e.g. audio) then we would be happy to support that,” says Dr Freeman.

“With the risk communication websites we host ourselves (the Predict sites), we have translated them into multiple languages (and have a translation facility to make it easy for translators to do more), and have worked with visually impaired users to ensure that the sites work with screen readers etc.”

On the topic of recording consultations so patients can review what was discussed, Dr Freeman said: “It’s not quite our area. I know that many clinicians are happy to have patients record consultations and I’ve seen some actively do it, and even video themselves demonstrating things specifically ‘for the camera’ so that the patient can refer back to the instructions. We always ensure that there is a ‘print’ feature on our risk communication websites that create a useful ‘take home’ print-out summarising the information.”

But Dr Freeman warns: “I think there’s risk if the information is poorly communicated. And some patients may very well want to leave the decision to the GP anyway, which is a perfectly valid choice - although the clinician still has to make sure that the information necessary for informed consent has been well communicated.

“The patient always has to make the decision of ‘treatment or no treatment’ - i.e. informed consent. They can fully accept the clinician’s recommendation, but everyone must feel that they can say ‘no’.”

One of the questions in this section was: What is being done to support patients asking for treatments outside of the standard medical approach (e.g. acupuncture, herbal medicine) - often side-lined in the decision making process? Dr Freeman says: “This is a really interesting one, and something we have been discussing in the production of the decision aids we’re currently working on. My personal opinion is that the decision aids should present the evidence (or be clear about the absence of evidence) about the most commonly known and widely available alternative therapies (the sorts of things that patients may well want to consider). I think patients will want to know the evidence around these alternatives - of both potential benefits and harms. If there isn’t good evidence, they should know that too."

The NHS will provide complementary or alternative medicines only in a limited range of circumstances, which are described on its website: www.nhs.uk/conditions/complementary-and-alternative-medicine. As with any medicine, doctors may prescribe them if they judge they may be clinically beneficial, but patients do not have a right to insist on being prescribed a particular medicine. They may, however, seek another opinion from a different doctor.

4. How can pressures such as lack of time, complex cases, COVID 19 etc be overcome in shared decision making?

The Winton Centre is working on a tool to help patients see how long they might wait for a transplant (given their personal characteristics), which is an example of a way to help shared decision making along, within the limits of the system. For people waiting for an organ, it’s vital how long they might wait. The wait is down to all sorts of factors, and hospital-dependent. Those factors are explicitly built into the tool. This enables patients to make decisions based on real-life information.

5. Is shared decision making the same as obtaining informed consent?

There are many similarities. But says Dr Freeman: “I think it would be dangerous to conflate them completely, though, as I think that during shared decision making there may be some issues which aren’t discussed in detail, but as the patient and clinician come to a decision, the conversation should go into full detail about the particular treatment option that is being favoured, leading into an informed consent conversation. That may, of course, be done at a different time, after the patient has had time to read more and consider more and discuss their options with family.”

In the Montgomery ruling, one of the key points is that consent must be "informed" and this is defined in law. For the full definition please see the Supreme Court’s decision.

6. What resources are there on shared decision making?

There are resources that are the subject of specific evaluation exercises (with researchers asking patients and clinicians to complete questionnaires, and randomisation of patients to groups with and without support aids).

On a larger scale, there are some that could make changes on a larger scale such data collected annually by the NHS on questions such as ‘were you as involved as you would have liked to have been in decision-making about your treatment?’

7. What role do regulators have in assessing if shared decision making is happening in the NHS?

Regulators can certainly play a role in ensuring that more clinicians practice share decision making. The Care Quality Commission explicitly expects GPs to involve patients “in decisions about your care and treatment and staff spend time talking these through with you”. The General Medical Council expects doctors to “work in partnership with patients, sharing with them the information they will need to make decisions about their care”. The Nursing and Midwifery Council’s code states that nurses and midwives must:

“Listen to people and respond to their preferences and concerns. To achieve this, you must: work in partnership with people to make sure you deliver care effectively; recognise and respect the contribution that people can make to their own health and wellbeing; encourage and empower people to share decisions about their treatment and care.”

Other questions

• Have any similar analysis been done with specialist nurses for organ donation?

The team at the Winton Centre team sat in on over 50 consultations with a whole range of healthcare professionals involved in transplantation. There was indeed a whole range of expertise in communication, and our site captures some of the excellent analogies and phrasings used by the best communicators to help everyone else.

• How stable are patients’ levels of risk aversion (about any specific issue) over time? Is there any reason to expect risk appetite to be a linear scale?

Dr Alex Freeman says: “Risk perception is a feeling, and it changes constantly. It is affected by your perception of the likelihood of something happening (which can change depending on how often you hear of it happening etc), and perception of the impact of it happening on you personally (which can change a lot depending on your personal feeling of vulnerability).

“Think about how sometimes you see a ‘bad news’-looking envelope or email and you might not feel up to opening it right then – your personal vulnerability is a bit too high, so your perception of the threat from that message is high. A bit later in the day, or in the week, you might feel up to dealing with that message – your perception has changed as your feeling of vulnerability has changed. We use numbers to try to be precise when communicating likelihoods and (sometimes) impacts, but risk perception is an emotional thing.”

Our event

Our event was on Wednesday 24th November.

Our panel was:

• Rachel Power (chair) - Chief Executive, Patients Association
• Ruby Bhatti OBE – Patient/Carer, Patients Association member
• Hameed Khan - Patient/carer, Patients Association member
• Alexandra Freeman - Executive Director, Winton Centre for Risk and Evidence Communication
• Jonathan Berry - Personalised Care Group, NHS England & Improvement
• Victoria Thomas - Head of Public Involvement, NICE

About our panel

Rachel Power (Chair)

Rachel has over 20 years’ experience of working in health and social care within the voluntary sector. She joined the Patients Association as its Chief Executive in June 2017 and has overseen a significant period of change, establishing a new senior leadership team and a new three-year strategy to help drive the organisation forward.

She is passionate about empowering patients and speaking on their behalf to ensure the patient voice is heard and acted upon.

Dr Ruby Bhatti OBE

She is chair of the Wolfson Centre for Applied Research, chair for the Quality and Safety Patient’s Panel and Improvement Academy at Bradford Institute for Health and Research, and board member for the National Institute for Health Research (NIHR) Applied Research Collaboration Yorkshire and Humber board. She is co-chair for the service user research panel at the University of Bradford. She is a reviewer for the NIHR and Assessor for NHS National Innovation Accelerator. She is a patient research ambassador for Bradford Teaching Hospital Foundation Trust. She sits on the Yorkshire & Humber – Black, Asian and minority ethnic advisory panel and patient research champion panel.

Ruby is also deputy lay chair for the Bradford District and Craven Clinical Commissioning Group; chair for the Primary Care Commissioning Committee; member of the West Yorkshire and Harrogate Joint Committee of Clinical Commissioning Groups. She sits as a lay associate hospital manager for the mental health department, and also a committee member on the mental health legislative committee both for Bradford District Care NHS Foundation Trust.

Ruby has been appointed to NHS England’s Patient and Public Voice Assurance Group and NIHR Recovery, Resilience and Growth Group. She was awarded an OBE for housing and young people and an honorary doctorate from the University of Bradford.

Hameed Khan

Hameed is an ex-service user of mental health services and a carer for his mother who has physical and mental ill health conditions. His vocational background is working in the voluntary and community sector, He has some teaching experience in further education colleges. He is very passionate about equality, diversity and inclusion and embeds this in his work and advocates for patients and carers to receive quality services. He is a member of the CVDPREVENT steering group.

Dr Alex Freeman

Alex is Executive Director of the Winton Centre for Risk & Evidence Communication, a multi-disciplinary group who research how best to help communicate evidence with decision makers. Within healthcare they have worked on producing training in shared decision making for healthcare professionals as well as decision support tools and risk communication tools, such as the NHS Predict online sites.

Jonathan Berry

Jonathan joined NHS England and Improvement in November 2015 where he leads on policy development with regard to health literacy and shared decision making. Prior to this he worked in the voluntary sector for a national organisation that specialises in delivering health literacy programmes in deprived communities, raising practitioner awareness about the impacts of low health literacy, user testing health information with people who have lower levels of health literacy and lobbying policy makers to ensure that health literacy is central to health and other government policies. He has an extensive health background, which includes developing and project managing the development of the national health literacy programme, Skilled for Health, on behalf of the Department of Health and Social Care and the Department for Business Innovation and Skills. Before that, he worked in the NHS leading on public and patient involvement for 10 years where, among other things, he introduced a Patient Advisory and Liaison service and an expert patient programme.

His background is in policy development, implementing policy, partnership working, quality improvement, change management, project management, training and advocacy. He has an MA in Applied Health Studies and was recently trained in motivational interviewing.

Victoria Thomas

Victoria has run the Public Involvement Programme at National Institute for Health and Care Excellence (NICE) since 2009, and has been with the Programme since 2001. Following a degree in art history, Victoria has worked exclusively in the public and voluntary sector, specialising in healthcare quality improvement activities and in patient and public involvement.  Victoria’s MSc, in Science and Society, concentrated on issues of science communication, science and the public, and lay people’s engagement with evidence-based healthcare initiatives.  Victoria has an interest in shared decision making, in particular the role of national guidance as the basis of informed decision making by both patient and clinician.

We are grateful to the following companies whose support has enabled us to carry out research into shared decision making, which enabled us to publish our report earlier in the year and develop this event: AbbVie, Alexion, Eido Healthcare and Novo Nordisk.