As a starting point see www.nhs.uk – the new public gateway to NHS services with substantial information for patients on the performance of different local hospitals and disease-specific information.
The NHS has produced a guide to show how public and patient engagement (PPE) can be done at each stage of the commisioning cycle at an individual and collective level in order to create localised, personalised and effective services. The process moves from information, to feedback, to influence and can be done at each stage of the cycle: needs assessment, decisions about priorities and strategies, service improvement, procurement and contracting and monitoring and performance management. The 2009-2010 work programme is available here (September 2009): Helping the NHS put patients at the heart of care. It includes Empowering People through LINks (local involvement networks) and other engagemetn systems, delivery of patient information including information prescriptions, use of NHS Constitution; Putting patient experience centre stage including development of local patient feedback strategies including a commitment for all hospitals to use real-time patient feedback to improve care; weaving patient experience into the quality agenda of Indicators for quality improvement (IQI), metrics and CQINS; the use of surveys to support the Care Quality Commission assessment process; performance maangement and new complaints system; Helping services to become more accountable and Supporting PPE through innovation.
The NHS Institute offers you a "feed" service to the latest research findings on patient experience. Go to http://feeds.feedburner.com/NHSAlertPatientExperience to subscribe. Note that IMPRESS also has a feed service - see bottom right of home page.
April 2010 from Picker Institute Europe - Invest in Engagement
Funded by the Department of Health this website is a one-stop shop for Public and Patient Experience and Engagement policy and resources.
The site is organised in six sections and provides access to 280 research reviews covering:
- patient experience
- health literacy
- choosing appropriate treatment (shared decisions)
- self-management
- health promotion
- public engagement
Each has
- a description of the evidence, with full references and links through to the original research reviews
- an analysis of outcomes in relation to patients’ knowledge, patient experience, the use of healthcare resources, and improved health and behaviours
- recommended Best Buys
- descriptions of why each topic is important, the current situation, and the relevant policy goals.
- case studies for each topic, some with video, and extensive links to sources of help and information on engagement.
The research review was conceived and developed by Dr Angela Coulter. She said:
"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."
It has been strongly endorsed by David Nicholson, Chief Executive of the NHS in England, and by Jeremy Taylor, Chief Executive of National Voices, a coalition of more than 200 service user organisations.
Local involvement Networks (LINks)
For further information see the Jargon Buster entry that has links to guides and further online resources.
Also we recommend looking at the work of the Picker Institute on user involvement here.
Patient Reported Outcome Measures (PROMs)
For a full definition see our Jargon Buster page here
Look at the IMPRESS Jargon Buster for more information and links on social and health care topics such as Information Prescriptions, care plans, self care, individual budgets, direct payments, and so on.
Involving patients in networks and committees
As a role model for an integrated care network, IMPRESS has considered how it should involve patients in its own work, in addition to its regular communication with the two patient organisations, Asthma UK and the British Lung Foundation. We recommend other networks and committees consider these guideliens from Josephine Ocloo:
1. Include induction and training with information for patients before joining the committee.
2. The chair should meet new patient members before they join a committee.
3. Take care to avoid jargon.
4. Make sure papers come out on time with a minimum of two weeks before the meeting and that the content is accessible.
5. Consider whether there would be payment of expenses and time.
6. Consider timing of meetings: there is a perception among patient and public members that the timing of meetings is based around staff convenience rather than taking into account their wishes.
7. Avoid tokenism: consider that there should be two patients on any committee.
8. Thought needs to be given to creating an atmosphere which facilitates lay contribution.
We also recommend this article: How do we find the right patients to consult? Williamson C. Quality in Primary Care 2007:15:195-9
Personalised care/supported self care
For patient involvement in their care, see
Personalising Care
pages and
Supporting self management
Communication skills
See separate IMPRESS page on our programme Effective Care - Effective Communication: Living and Dying with COPD.