What are they?
Also known as patient advisory boards, they are a group of patients, patient representatives, or caregivers who provide knowledgeable insight, feedback and recommendations to the requesting organization. Requests for advisory boards are commonly made by pharmaceutical companies, health care or research organizations, or other entities involved in patient care.
An advisory board may be requested for a single event or meeting, for example to address a specific topic or question. They may also be scheduled for several meetings throughout one or more years, providing ongoing feedback and recommendations for continuous improvement over time.
Why organize an advisory board?
Advisory boards ensure that patient voices are included in the decision-making process. This type of initiative is essential to bridge the gap between pharmaceutical companies, healthcare providers and people living with psoriatic disease.
IFPA participants in advisory boards are experts in their lived experience with psoriatic disease. They are skilled in providing relevant insight on unmet needs, and treatment and care preferences and expectations. Their expertise can also be valuable to, for example, review educational and marketing material, raise awareness for health issues that may not be prioritized by the healthcare system or the pharmaceutical companies, and advocate for clinical trial protocols and outcomes more in line with their needs.
Who is usually present on advisory boards?
Depending on the purpose of the engagement, advisory boards are commonly composed of:
- Patient representatives: individuals with experience in the specific health condition being addressed. These may include people living with the disease, patient representatives, or caregivers.
- Healthcare professionals: doctors, nurses, or other representatives of the healthcare system.
- Representatives of the requesting organization: these can include advisory or patient advocacy leaders, clinical operation managers, medical directors or liaisons, or researchers.
- IFPA representatives: IFPA staff experts are available to help prepare advisory board meetings, sit in, and share feedback from a global perspective.
What are the main benefits of hosting an advisory board?
- Advocate for patient-centered care: ensure the needs of patients are at the forefront of healthcare decisions.
- Boost engagement and trust: build a strong relationship between patients and healthcare professionals or pharmaceutical companies.
- Improve outcomes: tailor policies, services, and treatments to be more in line with patients’ needs, as well as more effective and accepted.
What IFPA offers:
IFPA is a global organization with more than 65 country members from all continents, representing over 60 million people living with psoriatic disease. IFPA’s large network of stakeholders in the psoriatic disease space are available to participate in advisory boards.
We also have an ambassador program that recruits and trains individuals with personal experience living with psoriatic disease to become strong advocates. We also have access to family members, close friends, or caregivers to someone with psoriatic disease.
We can be responsible for:
- Identifying participants according to the requesting organization’s needs (type of psoriatic disease, age of participant, treatment history, country representation, etc)
- Inviting participants and handle any substitutes if needed
- Organizing travel and accommodation for in-person meetings
- Handling agreements and payment of participants
- Organizing the meeting room and refreshments
- Requesting translators
- Having one representant of IFPA present in the meeting to support the participants and ensure that the meeting and the logistical part runs smoothly
One member of the IFPA secretariat is appointed as the project leader that is responsible for meeting the goals, budget, and timeline for the advisory board.
From our experience, it is easier for everyone, especially for participants, to have IFPA being the main point of contact. We will, therefore, handle all issues related to the advisory board, simplifying the communication and logistics for all participants.