The International Alliance of Patient Organizations (IAPO) released a “Policy Statement” last week to outline recommendations for information providers to meet consumer information needs. IAPO calls for greater patient involvement in policy development. IAPO explains the need for the statement:

“At present, the patients’ voice is not valued enough in policy-making and practice.  Patient involvement is often merely tokenism; its influence on policy-making can be restricted by practical and financial structures, differing knowledge bases, cultural barriers and personal attitudes.  Patient involvement should not be dependent on the good will of individuals but institutionalised in policy frameworks in order to become the rule, rather than the exception.”

IAPO’s policy statement includes four specific recommendations:

1. Stakeholders should extensively review existing healthcare mechanisms and structures for patient involvement, working with patients and patients’ representatives so that patient involvement is integrated into all decision-making processes, occurring from the start and on an ongoing basis.

2. Patient involvement initiatives should follow IAPO’s guidelines which incorporate the following:

* Robust and transparent mechanisms to ensure that patient views are acted upon, not just recorded
* Inclusion in initiation, design, implementation, communication and evaluation of initiatives
* Practical, psychological, financial and educational support for participants
* Varied methods to reach underrepresented groups and to gather a diversity of views

3. Patient involvement should occur whenever decisions are being discussed which will affect patients’ healthcare or lives including, but not restricted to, the following areas:

* Expert committees (e.g. ethics committees, reimbursement committees, governmental advisory committees, healthcare prioritisation and resource allocation committees)
* Regulatory processes
* Facilities design and development (e.g. hospital construction or refurbishment)
* Education and training programmes design (e.g. for health professionals)
* Research development (e.g. clinical trials design)
* Care and treatment guidelines design

4. All patients’ organizations should insist on involvement in all relevant health, economic, social and other policy-making where decisions will have an impact on patients’ lives.

This entry was posted on Monday, October 19th, 2009 at 9:05 am and is filed under International Ix. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.