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Five steps to engaging patients

Don Redding of the Picker Institute Europe gives tips on how PBC groups can make a success of patient and public engagement

Don Redding of the Picker Institute Europe gives tips on how PBC groups can make a success of patient and public engagement

There is a new drive to increase patient and public engagement (PPE) in primary care. But more may not be better. The Picker Institute advises commissioners to be clear about PPE objectives from the start. The benefits can be considerable, improving patient experience, health outcomes and cost-effectiveness.

The engagement agenda

The Darzi review gives concrete expression to the Government's agenda of ‘personalisation'. The purpose of the NHS constitution, the primary care review and other outputs is to give patients more involvement, choice and control over their care and treatment, and a right to be involved in service design and planning.

The primary and community care services strategy promises ‘new and innovative models of engagement'. And already, the world-class commissioning framework demands that PCTs provide community leadership, including ‘proactive' and ‘continuous' engagement.

Practice-based commissioners can therefore expect to be required to provide evidence that they consult and involve patients in their plans and in evaluating services. Some pioneering groups have involved patients in their governance or in consultations on services. Many more PBC groups are looking for guidance.

Unfortunately for PBC groups, PPE often turns out to be a murky swamp. No current area of policy focus is so ill-defined and confusing.

In 2007 the House of Commons health select committee concluded: ‘Confusion about the purpose of involvement has led to muddled initiatives and uncertainty about what should be done to achieve effective patient and public involvement.'

This muddle has left the public deeply sceptical about consultation, and even the best-intentioned initiatives can provoke apathy or even hostility.

That's the bad news. The good news is that you can cut through this confusion and scepticism, by:

• achieving clarity of objectives before beginning any project

• taking advice and researching – not reinventing the wheel

• focusing on what is effective.

1. Recognise the potential and limits of PPE

PPE is often claimed to deliver a vast range of benefits, from improving the patient experience, through better service design, to making health services accountable.

Rarely are these purposes separated out. No one project can deliver all the claimed benefits. For example, involving a small group of patients in service design does not make health services publicly accountable.

2. Set a single principal objective for each project

The Picker Institute, which is increasingly working with commissioners, advises that it is critically important to invest time before the start of a project to identify, preferably, a single principal objective for each project that aims to engage patients or the public.

Get the objective in clear focus, and other things follow: deciding which people to target; what techniques to use; and how to judge success.

Take needs assessment, for example. If the objective is to discover the needs of a wide population, you will need to target a sizeable representative sample, requiring either a specially designed telephone survey or a postal survey drawn from the electoral register.

This could produce a detailed breakdown of self-reported ill-health, lifestyle factors and readiness to change, segmented by socioeconomic status, geographical location, education and ethnicity.

41203043If, however, the objective is to understand and address the needs of a specific group, such as an ethnic minority, the target group will be smaller, and the best techniques may be consultations with community leaders and focus group discussions with ordinary people, producing a more qualitative report.

Likewise with service design. If the aim is to secure patient input to planning, PBC groups might want to establish a panel or reference group of relevant patients to advise over time.

If, however, the objective is to improve patient engagement in treatment decisions, in-depth interviews with patients, exploring their values and preferences, might be better.

The example at the bottom of the page - Case Study: How should we involve patient in the redesign of our arthritis service - gives an example of how a PBC consortium might approach such decision-making.

3. Research what is already known about your objective

Once the objective is established, more time should be invested to research what is already known. PPE is bedevilled by poorly designed initiatives that repeat earlier failures or reproduce results already available.

For example, for needs assessment, patient experience of services or local outcomes, there will be many existing sources of data. The PCT and local authority should provide a Joint Strategic Needs Assessment for your locality, and the public health observatories also map local areas.

Every local trust will carry out an annual survey of patient experience, and some will gather additional feedback, such as using frequent feedback techniques (see bottom of page).

Similarly, before designing a project using a survey or focus groups, it is well worth finding out what kind of tested and validated techniques, and best practice, could be adopted or adapted.

Be willing to take advice: from your PCT, your local authority, your LINk, and reputable survey providers and research organisations.

4. Focus on what is known to be effective

There is an evidence base for PPE that, although far from complete, can strongly point the way to effectiveness. The Picker Institute has reviewed all of the available systematic evidence in English worldwide and published a summary entitled Patients Make it Better (click to download a pdf).

The evidence is far stronger for patient engagement – that is, interventions designed to support self-care, and patients' involvement in decisions about their care and treatment – than it is for collective public involvement.

5. Remember – it's more than just feedback

PBC groups are ideally placed to redesign services, or to commission new ones, that aim to make patient engagement in decisions central to their success. This can produce significant returns on investment, for the following reasons:

• engaged patients gain greater knowledge and confidence to manage their own conditions

• engaged patients are more likely to adhere to plans agreed with their clinicians –medicines, self-management, screening and so on

• engaged patients are less likely to suffer from severe depression – a major complicating factor in long-term conditions

• some interventions that support patient engagement have proven health benefits

• engaged patients often use resources more efficiently – for example, they may be less likely to choose surgery where there are alternative options.

Patient engagement interventions can be low-cost – consisting of information and education resources, access to records, decision aids, and techniques to overcome low health literacy – but will also have a cost in redesigning services, pathways and the work of health professionals.

So the final message is: don't automatically believe that PPE means public involvement in committees, public meetings, or consultative forums.

Keep public and patient engagement distinct – and always consider whether individual patient engagement might provide the best return on investment.

Don Redding is head of policy and communications at Picker Institute Europe

Case study: handheld devices for real-time feedback

Patients in hospitals are giving real-time frequent feedback via handheld devices the size of a mobile phone.

Developed by the Picker Institute, the devices are proving a useful addition to other survey techniques because they allow data on the quality of the patient's experience to be recorded more frequently than single postal surveys allow.

The devices can hold more than one questionnaire at a time, so that ‘core' questions from the national surveys, which may interest boards, can be combined with questions specific to a very local service.

Survey results can be biased if care team staff are directly involved in ‘helping' the patient to complete them. ‘Neutrals' such as friends of the hospital can distribute their handheld devices so patients feel more free to record their experiences accurately.

An important element of frequent feedback is its ownership by frontline staff in the units where it is gathered. Unlike other surveys, the results can be analysed and made available rapidly so that staff can take their own action at a local level to address issues raised.

Trusts such as Southampton University Hospitals NHS Trust and Harrogate and District NHS Foundation Trust have used it principally on inpatient wards, rather than A&E or maternity.

Harrogate felt that this technology could give a voice to patients who might be less able to contribute to paper surveys or complaints system, such as the frail and elderly and those who were less confident of expressing any dissatisfaction about the service received.

One piece of research among such a group of patients highlighted their desire for privacy when decisions needed to be discussed.

Although the principle of frequent feedback is primarily developed for acute hospitals with ‘captive' patient populations, primary care organisations are also looking at its potential.

For practice-based commissioners a potential application would be to monitor and evaluate patients' experience of a new service to see whether it generates the expected benefits.

Like any technique, however, it should be carefully assessed for its relevance to the objectives of a specific project, the target group of patients, and the particular reporting needs.

Case study: How should we involve patients in the redesign of our arthritis service?

A city-wide PBC consortium is considering how to plan additional primary care services for people with arthritis. This affects a large but identifiable population. They can be contacted from GP disease registers. But what for?

One potential objective would be to find out how they currently experience GP services. In that case, a patient experience survey could be used, with a sufficiently large sample to get meaningful results; the success indicator could be to identify three key ways for GP practices in the consortium to change their provision.

However, on reflection, the consortium decides this will not tell them enough to design new services.
It therefore determines that the main objective of engaging these patients should be to find out what they feel they most need to support their successful self-care.

In this case, focus group discussions with a small number of the patients will ‘discover' the hidden issues behind their condition.

The success indicator for the project may be to identify three gaps in provision, and place them in priority order.

Potential objectives for PPE Patients in waiting room

It is critical at the start of a project that you invest time to identify your principal objective

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