Practical tips for patient engagement
Share your practical experience and help advance
the patient engagement agenda
Turning the community’s practical tips about what to do and not to do when developing and delivering patient engagement into an actionable, easy to use handbook.
This is an initiative powered by PFMD, requested by the patient engagement community, and based on the Patient Engagement Quality Guidance. It’s part of a systematic effort to make patient engagement a reality across the life cycle of medicines.
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Still wondering why you
Simple. Your learnings can concretely and actively support the patient engagement ecosystem.
Your learnings, your successes can serve as guidance and inspiration for other patient engagement ambassadors out there actively working on involving patients in the medicines development process.
The feedback is following 7 quality criteria for patient engagement developed through a strong methodological processes.
Examples to illustrate each PE Quality Criteria
Shared purposeDOAllow additional time for meetings with relevant people (patients, carers, healthcare professionals) to discuss aims, objectives, outcomes, protocol of investigation etc.DON’TPresent a long list of aims and objectives using technical terms at a steering group meeting with limited time to discuss and no time in advance for people to consider them.
Respect and accessibilityDOThink about participants with long-term conditions (fatigue, brain fog, pain) and try to accommodate their needs. Ask the participants and where possible think of transportation, accessibility, the length of the meeting with proper breaks to maintain energy levels, dissemination of potential pre-reads and their format (hard copy, electronic), financial considerations and additional support for patients during the day.DON’TCreate 9 to 5 meetings when patients with long term conditions with a rigid format.
Roles and responsibilitiesDOTry to have more than one patient representative on a committee. This allows for variable health states, and life stages. Also allows them to support one another in what can be a quite intimidating committee environment.DON’TJust provide documents at steering group meetings. You must allow time for people to have a read and consider the documents – ideally a fortnight.
Representativeness of stakeholdersDOBe as inclusive as possible with the populations you consult with. Consider reaching out to gatekeepers – trusted charities or community leaders – who can facilitate meetings with hard to reach groups. Factor in the time it will take to build genuine relationships.DON’TAlways use the same patient as patient engagement representative for all projects. Try not to use patient engagement representatives with generic expertise rather than condition-relevant experience. If your representative has a high level of education try to include others with lower levels of educational attainment.
Capacity and capability for engagementDOConsider training patient engagement representatives on project processes e.g ICH GCP, committee skills etc.DON’TOnly invite the patient engagement representative to an annual report meeting for a limited section of the meeting.
Transparency in communication and documentationDOInvolve the patient engagement representatives heavily in the content and style of all patient-facing documents e.g. patient information sheets, consent forms, lay project reports, project website etc.DON’TPresume patient engagement representatives will have nothing to contribute to the more technical peer reviewed publications.
Continuity and sustainabilityDOTry to have a succession plan for longer projects so patient engagement representatives can hand over if they can no longer contribute in the way they originally agreed to do so.DON’THave a solitary patient engagement representative. Circumstances can change rapidly and they may no longer be able to contribute as originally planned.
About this initiative
As part of a robust methodology PFMD organised 6 workshops with 76 international participants representing patients, patient organisations, industry (including CRO and biotech), independent experts (with backgrounds from academia, research and also industry), HTA and regulatory.
During this workshops an action plan was prioritised. The objective?
Making patient engagement happen across the medicines development life cycle, via a comprehensive framework as set of tools.
The concrete outputs until now are The Patient Engagement Quality Guidance, The Book of Good Practice and and the Reasonable Legal Agreements initiative. The practical tips handbook was another prioritised action.