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
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.
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
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.
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|
|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|
These materials are drawn from the web resource Invest in Engagement www.investinengagement.info
Don Redding is a policy and communications consultant who was commissioning editor for Invest in Engagement