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Public involvement resources

There are lots of other publications on PPI, but we think these are worth spending time on. This could be because of their scope, or because they give insight about particular types of service users, or just because we think they've got the right approach. If you are short on time, M-A-C's Top 5 Patient Public Involvement Resources are our highly recommended picks.

June 2007 Update: M-A-C first compiled this resources page for patient and public involvement in 2003 when we were supporting the Epsom and St Helier NHS Trust to help them identify the wide range of patient and public engagement activities going on inside and outside the organisation. After that, like Topsy, "it just growed" and we periodically weeded and revised it. It was last updated towards the end of 2006 when we added back issues of PPI Monitor as a permanent resource. Now that the National Centre for Involvement is up and running with a mission to identify and publicise effective resources for PPI, M-A-C is no longer updating this page, but it is available here as a selected starting point for anyone new to this literature.

We continue to comment on PPI-relevant resources and developments in our patient & public involvement blog.

Most of these links are Adobe PDFs (often the URL displayed has been truncated - indicated by '..'). To save the file to your computer, right click on the link and select 'Save Target As...'


  1. PPI Monitor Archives
    20 past issues of PPI Monitor offering wealth of case histories that showed what worked and what did not.
    PPI Monitor Archives
     
  2. "Now I Feel Tall" - what a Patient Led NHS Feels Like
    Department of Health (December 2005). M-A-C posted commentary on this guide - Patient feelings - Key to service satisfaction in the NHS on our blog (6/3/2006).
    www.dh.gov.uk/..
     
  3. How engaged are people in their health care? Ellins J, Coulter A.
    The Health Foundation, November 2005
    www.pickereurope...
     
  4. Improving Services, Improving Lives: evidence and key themes
    Office of the Deputy Prime Minister, Social Exclusion Unit (October 2005)
    www.socialexclusionunit.gov.uk/downloaddoc.asp?id=731
     
  5. Patient involvement and collaboration in shared decision-making: a structured review to inform chronic disease management Marshall SS, Haywood KL, Fitzpatrick R
    Report from the Patient-reported Health Instruments Group to the Department of Health (March 2005)
    phi.uhce.ox.ac.uk/CDMReport_Final_rev.pdf
     
  6. Involving Patients and Carers
    NHS Modernisation Agency's Improvement Leaders' Guide (Updated in 2005)
    www.wise.nhs.uk/..
     
  7. A New Vision for Adult Social Care
    York University "scoping paper" on social care users' views" provides key background to the latest green paper proposals (March 2005)
    www.york.ac.uk/..
     
  8. "Getting over the Wall": how the NHS is Improving the Patient's Experience
    Stories from NHS organisations who say they are doing it (October 2004)
    www.dh.gov.uk/..
     
  9. Patient and Public Involvement in Health: the evidence for policy implementation)
    Farrell, Christine (compiler) Results of the 12 DH-funded projects in the "Health in Partnership" research programme  (May 2004)
    www.dh.gov.uk/..
     
  10. What CHI has found in: primary care trusts
    Commission for Health Improvement (March 2004)
    Despite some good practice, this sector report found little evidence of PPI making an impact on the commissioning process in PCTs
    www.healthcarecommission.org.uk/..
     
  11. Choice, Responsiveness and Equity National Consultation
    MORI for Department of Health (March 2004)
    It appears that what people want is not more choice of hospital and doctor so much as being involved in deciding what is going on wherever it is happening
    www.dh.gov.uk/..
     
  12. Results from a programme of consultation to develop a patient experience statement: final report.
    Department of Health (March 2004)
    Research about what the "patient experience" really means to users and how they want to be involved in decision making about it.
    www.dh.gov.uk/..
     
  13. Children's Voices Project : feedback from children and young people about their experience and expectations of healthcare.
    Commission for Health Improvement (March 2004)
    A unique resource of 700+ pieces of feedback about environment, communications, involvement, privacy, dignity and other topics. 
    www.healthcarecommission.org.uk/..
     
  14. Sharing the Learning on Patient and Public Involvement from CHI's work
    Commission for Health Improvement (February 2004)
    What CHI has found out based on more then 300 inspections and its own research on patient and public involvement.
    www.healthcarecommission.org.uk/..
     
  15. An A-Z of Current Patient and Public Involvement Issues and Guidance
    Commission for Health Improvement (updated version, January 2004)
    www.healthcarecommission.org.uk/..
     
  16. Getting Better? A Report on the NHS
    Commission for Health Improvement (CHI) study in England (May 2003) contains valuable sections on  "what people want from the NHS" and "hallmarks of an improving organisation"
    www.healthcarecommission.org.uk/..
     
  17. Connecting with Users and Citizens: User Focus
    Audit Commission (January 2003) outlines principles of successful consultation and involvement and what service users think about the process. 
    www.audit-commission.gov.uk/..
     
  18. Patient and Public Involvement In Wales
    Signposts - a practical guide to public and patient involvement in Wales (October 2001)
    Signposts Two - putting patient and public involvement into practice in Wales (September 2003)
     
  19. A Practical Guide for Involving the Public in Health and Social Services
    Describes "how to do it" PPI approaches and local experiences from Leicester City Health Action Zone (July 2003)
    www.dh.gov.uk/..
     



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