PFMD Patient Engagement Quality Guidance (PEQG) is a practical tool for all stakeholders to use in planning new patient engagement and involvement (PE) activities or projects where patients are truly and meaningfully involved. It can also be used to assess the level of PE in ongoing or completed projects. PEQG was co-created iteratively with a wide group of representatives representing over 100 individuals.
The PEQG introduces 7 Quality Criteria that are the building blocks for high quality PE.
During 2018-2019, PFMD will be piloting the usability of the PE Quality Guidance with 10 organisations located across the world and representing key stakeholders in the medicines' research and development continuum. In addition, we want to encourage a larger group of people and organisations to use the guidance and
Apply PE Quality Guidance in planning, conducting or assessing PE projects,
Share their learnings on using the guidance,
To learn how the guidance potentially impacts the outcomes of the project and what benefits it brings.
If you are planning to use the PE Quality Guidance (or have already started), please complete this registration form (the form has 11 questions and typically takes 5 minutes to complete). If you are piloting more than one project, please fill this registration form for each of the projects separately.
_____________________________________________________ Data governance and consent
How will we use the information provided? The purpose of collecting the information in this form is to learn from the implementation of the PE Quality Guidance that ultimately will enable us to further improve the PE Quality Criteria to be better integrated into policy and practice.
With the contact information you provide we will invite you to complete a survey about your experience of putting the PE Quality Guidance into practice (in about 6 months time).
The survey results will be used to communicate about the piloting projects, their results and the analysis that follows the piloting period.
Who can view information provided? The information collected will be shared in confidence with members of the PFMD Framework building team and the team that analyses and reports on the information collected. This information will be hosted on a secure server with restricted access. Anonymised information from the form may be made publicly available as part of a report or publication about the data collected in this form.
What will happen to the information provided Data collected will be held for the duration of the project. Data will not be passed on, sold or used for any other purpose other than stated.
To remove all the information that you provide by completing this form and to stop receiving communications from us, please contact pfmd@thesynergist.org.
