The NHS needs a strategy for shared decision-making with patients, here we set out why, for whom, and some evidence for what works.

The majority of patients want involvement in decisions about their care (see boxes). Clinicians and NHS organisations are required by law and regulation to enable patients to achieve this right. But large numbers of patients still say they are not involved enough.

Now the Department of Health is focusing on encouraging healthcare commissioners to insist on better patient engagement in the care they purchase.  

The DH funded Picker Institute Europe to produce Invest in Engagement, to give both commissioners and providers access to the best evidence about patient and public engagement (PPE).

The resource makes accessible the findings of 280 systematic and high level research reviews that examine the outcomes and effectiveness of PPE.

This evidence is marshalled under six subject headings: patient experience, health literacy, self-management, health promotion, public engagement, and sharing treatment decisions, which we feature here.

For each topic, the review findings are summarised according to four outcomes:

  • Impact on patients’ knowledge
  • Improvement to patient experience
  • Effect on service use and costs
  • Change to health outcomes or behaviours.

For researchers and clinicians, all the studies are fully referenced and linked. But the resource also provides summaries of proven interventions - the “best buys” for commissioners and providers. There are contextual introductions, practical case studies, and links to sources of help.

Dr Angela Coulter, the advocate of patient and public engagement who conceived and developed the evidence review, says: ‘This unique database reveals the huge benefits that could be gained if all patients were fully informed and well supported by staff so they are actively engaged in their care.’

As Sir David Nicholson, NHS chief executive, said at the launch, “this should be a key resource for the service.”

Shared decisions about treatment – the context

Policy

The NHS Constitution says patients have the rights to be informed about all potential treatment choices, and to be involved in decisions about their care.

 All doctors are under a professional duty to work as partners with their patients. Nurses and midwives have a similar responsibility in their code.

The regulations for the registration of all heath and social care providers make clear that they are required to involve their users in decisions.

Who wants it?

Three quarters of patients say they want to make their own decisions, with their clinicians, on the most appropriate care and treatment for their circumstances.

What’s the current situation?

Shared decision-making is not increasing. In national surveys, consistently half of all inpatients and nearly one third of primary care patients and outpatients say they were not as involved as they wanted to be in decisions about their care and treatment.

What Works?

Evidence base

27 systematic reviews covering coaching and question prompts for patients; patient decision aids; access to medical records.

Recommended best buys for commissioners and providers

Patient decision aids proven to:

Increase patient involvement in decisions

Improve understanding of treatment options

Improve perception of risks

Improve the quality of decision-making

Help uptake of screening

May reduce intervention rates

May be cost-effective

Patient access to medical records shown to:  

Improve patients’ knowledge and recall

Produce greater sense of empowerment

Reduce incidence of lost records

Question prompts and coaching for patients:

Increase question-asking in consultations

May increase patients’ knowledge and understanding

May empower patients and improve satisfaction

Does not necessarily increase length of consultations

Case study

At the National Refractory Angina Centre (NRAC) at Royal Liverpool & Broad Green University Hospital Trust there is no rush to interventionist treatment.

Instead, patients have an initial three hour consultation with two specialists (cardiology and pain) to explore the patients’ and carers’ understanding of their condition, their lifestyle and values.

There follows a 12 week course of therapy and consultation during which patients examine in depth the treatment options open to them, as well as lifestyle changes they could make. They are empowered to choose for themselves the options best suited to their own circumstances.

NRAC believes visits to GPs, emergency hospital admissions and invasive heart procedures are reduced as a result.

In 2009, NRAC became the first health service provider to win the overall UK Customer Experience Award and receive the maximum five star accreditation for consistently delivering excellent patient experience.

 www.angina.org/

Sources of help

University of Ottawa database of decision aids http://decisionaid.ohri.ca/index.html

Foundation for Informed Medical Decision Making http://www.informedmedicaldecisions.org/

Patient Access Electronic Records System http://www.paers.co.uk/

Haughton Thornley Medical Centres (records access) http://www.htmc.co.uk/pages/pv.asp?p=htmc101

Department of Health question prompts for patients http://www.nhs.uk/NHSEngland/AboutNHSservices/questionstoask/Pages/Makethemostofyourappointment.aspx

Best buys on the other five topics

Invest in Engagement recommends that before commissioning these interventions, commissioners should look in detail at the evidence base.

To improve patient experience
Communications training for health professionals
Patient feedback (surveys, focus groups, complaints)
Patient-centred consulting styles and longer consultations
Patient-reported outcome measures (PROMs)
Public reporting of performance data
To increase health literacy
Personalised patient information (paper and electronic) reinforced by professional or lay support
Pre-operative and pre-discharge information materials
Telephone counselling and helplines, tele-care, tele-health, tele-monitoring
To support self-management

Education and support for patients with specific conditions, integrated into routine healthcare with

active involvement of health professionals

Lay-led generic self-management educational courses
Simplified dosing strategies plus information for patients
Home-based self-monitoring
Interactive web-based self-management programmes
To promote better health and reduce inequalities
Opportunistic advice from health professionals in hospital, primary care and workplace
Targeted health promotion / social marketing programmes
Proactive telephone counselling using motivational techniques
Self-help programmes and websites
For children: Parenting programmes and home visits; and health education in schools including attention to social and emotional wellbeing
Coordinated sexual health strategies including one-to-one counselling
For older people: Physical activity programmes
Mass media campaigns
To involve local people in priority-setting and service change
Deliberative methods including citizen’s juries
Patient involvement in quality initiatives
Patient involvement in the development of information materials
Community development

These materials are drawn from the web resource Invest in Engagement www.investinengagement.info  

Source

Don Redding is a policy and communications consultant who was commissioning editor for Invest in Engagement  

Topics