Giving your patients a voice

Dr Brian Fisher explains how involving the public can help in setting up or commissioning services

Why you should be involving patients and the public

A practical imperative - The evidence is good that involving users of services leads to better designs that get used more often.

A financial imperative - There are many examples of redesigns with patient and public involvement (PPI) that have led to savings.

A moral imperative - The NHS is funded by everyone and we should play a part in ensuring it meets everyone's needs.

A legal imperative - GP consortia will have a legal duty to involve patients and the public.

Cover for difficult decisions - Controversial decisions may be easier to take and justify if commissioners have brought the public with them in advance.

Users can identify problems and solutions -Although some solutions to a problem will be clinical, many others will not.

Diversity issues - Different people from different communities may have different sorts of barriers to getting what they need, and may make different trade-offs between elements (such as access v quality).

And why you may think you shouldn't

They'll want the earth – patients will have grandiose, unaffordable ideas

In reality, patients' requests are often cheap or cost free, frequently focusing on skills or relationships.

There is no point just working with the usual suspects

Obtaining a representative group of people for commissioning purposes is almost impossible, but working with some people is better than working with none. It needs to be made clear to the lay delegates on the committees that they are a gateway to other groups and individuals outside. They should be communicating with them and bringing their views to the table.

Responding to local people will result in different policies in different areas

This is true – and is a legitimate and defensible way of ensuring that commissioning meets local need, so long as the differences are rational and justifiable.

It's of no benefit – and it's expensive

It certainly can be expensive if you do not do it. Some organisations have been involved in lengthy acrimonious consultations and legal challenges when they got it wrong. PPI does not cost the earth and it can save resources if you get your service improvements right.

It's a lot of work

While PPI does introduce another level of complexity in decision making, my argument would be that it is cost-effective and worthwhile.

Doctors know best

The modern NHS has rejected such paternalistic attitudes. Sharing power with patients is the efficient, effective and ethical way to proceed.

It's not a good idea to air dirty laundry in public

This has to be context-specific, but in general, the default position should be that the public are entitled to be part of the decision and they are likely to add value.

How to do it

Representatives on every key committee

Having lay people on committees can profoundly change the nature of conversations. It is essential that delegates see themselves as conduits to further advice and information from local people outside the consortium. They need to have connections with other organisations such as local involvement networks (LINKS). Most PCTs will have arrangements for payment. For advice, contact me at brianfisher36@btinternet.com. One consortium with an excellent track record of doing this is Principia.

Questionnaires and audits

Most NHS organisations have a wealth of experience of using questionnaires in surgery waiting rooms. A variant that can be useful is real-time feedback from electronic questionnaires at the bedside or on leaving a building. More detail can be found at www.pickereurope.org.

Community development

Community development is a term applied to the practice of working with civic leaders to bring change locally. It has been shown to enable the NHS to:

• enhance PPI

• tackle health inequalities

• offer significant health protection to individuals and communities

• enhance behaviour change.

Your local authority or primary care organisation is likely to have some knowledge of this approach. The approach can link practices with communities of interest.

It can be delegated to other workers, preferably professional community development workers.

General information and evidence for effectiveness and cost-effectiveness can be found at www.healthempowerment group.org.uk.

Experience-based design

This approach enables you to understand patients' experience of specific parts of the NHS. It focuses on emotional experiences and derives stories which then link neatly into routes to redesign.

It may be linked with discovery interviews. The NHS Institute for Innovation and Improvement website tells you more.

Looking at existing evidence

The Picker Institute Europe and the Cochrane database have conducted national and international studies that will answer most questions at this level you want answered.

You should focus evaluation and information gathering on local issues. For example, what do people think about your local hospital?

What redesign issues are relevant for your local diabetes pathways? Here too there may be existing information.

Lewisham PCT has a LINK database which aggregates patient and public information from multiple sources, such as patient advocacy and liaison service (PALS) data and, most importantly, data from ordinary conversations with local people.

These are searchable, both through the tags and via the free text, and can identify:

• all comments about a particular condition, such as heart problems

• the top themes that are concerning users of the local hospital

• events that are so serious that processes need to be put in place to prevent them ever happening again.

Which organisations to approach

• PALS: every hospital has one. Their role is to be advocates for patients and try and resolve problems simply and amicably if possible.

• LINKS: can support practices in setting up patient participation groups (PPGs), finding skilled people to sit on committees, running limited training programmes and getting in touch with patients with particular problems to help with pathway redesign.

• Primary care organisations: they will have many useful contacts and have much experience of various techniques of involvement.

• Local authorities can really help consortia, with long-standing experience of local groups, commissioning of all sorts, sophisticated engagement processes and much routine data collection that the consortium can harness.

• The National Association for Patient Participation has huge experience in setting up and supporting PPGs.

• The NHS Alliance is running training programmes for consortia and offers regular advice and support on PPI through its steering group.

• The RCGP will also be running courses for consortia. The Centre for Commissioning will be operational later this year.