How can Patient Involvement in Health Policy be improved?

IAPO has developed a Policy Statement on patient involvement, which calls for all stakeholders involved in healthcare to:

Acknowledge the importance of the involvement of patients and patients' organizations in all decision-making that will impact on patients lives

Review existing healthcare mechanisms for patient involvement, considering Guidelines like IAPO's and talking to patients and patients' organizations.

Revise patient involvement initiatives to follow patient involvement guidelines such as IAPO's which incorporate the following:

• Robust and transparent mechanisms and that patient views are acted upon, not just recorded
• Inclusion at all stages- initiation, design, implementation, communication and evaluation of initiatives
• Support including practical, psychological, financial and educational, as appropriate
• Varied methods to reach underrepresented groups and to gather a diversity of views

Our Policy Statement can be viewed online or downloaded as a PDF file for you to save, print or distribute. 

Our Guidelines can be used as a checklist by international, regional, national and local organizations to involve and engage patients and patients' organizations in health-related decision-making processes in a comprehensive, appropriate and meaningful way.  The Guidelines can be viewed online or downloaded as a PDF file.

They were published in May 2005 following a process of consultation with IAPO's global network of patients' organizations and health-related organizations to reflect the needs and preferences of patients and patients' organizations. 


Further Information and Resources

Patient-Centred Healthcare
Bauman A E, Fardy H J, Harris P G (2003), Getting it right: why bother with patient-centred care? Medical Journal of Australia, 179 (5), 253-256.

International Alliance of Patients' Organizations (2005), What is Patient-Centred Healthcare?: A Review of Definitions and Principles.

Consultation Response: "IAPO responds to consultation on EU Health Strategy, September 2004"  This report outlines IAPO's response to the EU Health Commissioner, David Byrne's paper, "Enabling Good Health for All: A Reflection Process for the New EU Health Strategy".

Little P, Everitt H, Williamson, I et al (2001), Observational study of effect of patient centredness and positive approach to outcomes of general practice consultations. British Medical Journal. 323, 908-911.

Patient Involvement
Department of Health (2004), Patient and Public Involvement in Health: The Evidence for Policy Implementation. London: Department of Health Publications.  This report reviews and summarises 12 pieces of research about patient and public involvement.  It shows that the outcomes for patients, staff, for communities and for health delivery are almost universally positive.

Presentation: "International Developments in Patient Involvement", by Jo Harkness, IAPO Policy & External Affairs Director.  Presented at Patient Involvement Engagement Information 2005 Conference in London, 24-25 May 2005.  The presentation outlined the integral relationship between information and involvement in engaging patients in their personal care.  It also highlighted the need for meaningful involvement of patients and patient representatives in health policy at all levels, the valuable roles and responsibilities of patients' organizations to participate in health policy decision-making activities and outlined IAPO's practical Guidelines For Patient Involvement.

Thompson A G H, (2003/2004). Moving beyond the rhetoric of citizen involvement: Strategies for enablement. Eurohealth, 9(4): 5-8.

If you can recommend any articles that we can either reproduce online or link to, with full acknowledgement given to authors and publishers, please email us at info@patientsorganizations.org.