What is a Patient Advisory Council?
Patient engagement has evolved in the public and private sectors over the years. Many organizations including healthcare institutions, pharmaceutical and biotechnology companies, foundations and non-profit associations are forming patient advisory boards or patient advisory councils as a tactic to ensure they are incorporating diverse perspectives into their policies and practices. Patient advisory councils (PAC) are about considering the patient experience “through the patient’s eyes,” and when it comes to research PAC’s help to ensure that research is “with” patients and caregivers as partners through the process instead of research being conducted “on, to, or about patients.1”
What is the purpose of a patient advisory council?
Patient advisory councils are a key way to obtain information and opinions directly from patients and caregivers to better understand their needs, challenges, and issues pertaining to managing their daily care plans and their condition(s). PACs enable organizations to better understand, and meet the needs of, patients and their caregivers in terms of education, new product development, and support services for patients.
Patient advisory councils can be utilized for quality improvement and safety efforts in hospitals, developing communication materials in a healthcare setting, designing protocols and endpoint measures in clinical trials, or providing guidance and input on the direction of a drug development process.
What is the value in participating in a PAC?
Participating in a patient advisory council is a unique opportunity for patients and caregivers. As a patient or caregiver sharing your lived experiences can help others in various industries and organizations better understand how you manage your condition(s) and how they can identify meaningful and beneficial outcomes that align with the needs of patients.
When organizations implement PACs it isn’t just a way to amplify the voices of patients and caregivers it is a way to ensure that all aspects of business and science are created with a singular focus: to improve the patient experience and ensure the voices of patients and caregivers are a central consideration in the strategic direction and offerings of an organization.
How does a patient advisory council work?
Every patient advisory council will have a specific purpose or mission statement. For hospitals, a PAC may be set up in order to improve the quality of the healthcare experience for patients and family members. In pharmaceutical or biotechnology companies PACs may be utilized to learn first hand what it’s like to be diagnosed and treated for a certain health condition, the councils help the sponsors better understand how to engage patients and caregivers in research and development or clinical trial development.
PAC meetings will have set agenda items and a facilitator will guide the discuss and help gather feedback from the members of the council. While some councils are made up of just patients, other councils will be comprised of patients, caregivers or family members and staff from the organization.
What types of projects might a patient advisory council work on?
The purpose or mission of the council will determine the types of projects the council would work on. Examples could be:
- Perceived burdens/barriers to clinical trial participation
- Perceptions of clinical research/motivators for participating in clinical trials
- Reactions to a protocol design
- Understanding of an informed consent document
PACs convene at certain points, sometimes monthly for example if they are in a hospital, while others are formed for a specific project and may meet only a couple times. Some patient advisory councils meet in person while others meet virtually and communicate through an online platform, app or through conference calls.
- Patient-Centered Outcomes Research Institute and Plantetree. “Patient Engagement in Research: A tool kit for patient-family advisory councils”, http://planetree.org/wp-content/uploads/2017/09/Patient-Engagement-in-Research-A-Toolkit-for-PFACs.pdf