Jun 7, 2021

AN INTRODUCTION TO PATIENT ADVISORY GROUPS

At Fighting Blindness Canada, we often connect with pharmaceutical companies who are developing treatments for blinding eye diseases and are working to understand the patient voice. We have developed a brief survey to support connecting our community to these groups.

If you are a Canadian resident who would like to participate or learn more about patient advisory groups, please fill out the survey.

FREQUENTLY ASKED QUESTIONS ABOUT PATIENT ADVISORY GROUPS

What is a patient advisory group?

A patient advisory group (PAG) is a group of people who have an interest or experience with the disease, treatment or research that is discussed. These groups are used to gain diverse perspectives about anything from the content or format of a patient brochure, to understanding a person’s experience with a particular treatment.
PAG meetings are like market research groups. The formation and use of PAGs have been used in healthcare organizations and government bodies like CADTH, and they are becoming standard practice with many pharmaceutical companies.

Why do pharmaceutical companies organize PAGs?

Pharmaceutical PAGs are used to gain important insight into the experiences, likes and dislikes of patients, caregivers, and healthcare providers. They will often hold PAGs early in the planning of a clinical trial, treatment, or resource, to ensure the project accurately reflects the community and its needs.

For example, when a pharmaceutical company is developing a patient brochure for a clinical trial for achromatopsia, it is useful to include patients with achromatopsia to understand what is visible and legible for them.

Who attends these meetings?

PAGs consist of patients or their loved ones (with or without clinical trial experience). Companies will often search for individuals within different demographics so that they hear from people who may have different experiences.

Other members of a PAG may include patient advocacy group representatives and healthcare providers from the relevant disease space, members of the pharmaceutical company, and sometimes third parties like graphic designers.

Why is it important to include lived experience?

The patient voice is an invaluable resource in the development of treatments and clinical trials. Many times, a PAG is the first time pharmaceutical employees are interacting directly with a patient and learning what it is like to live with the particular disease. Patient input can influence the flow of a clinical trial, like the frequency of follow up appointments that is most practical. Much more can be learned about the disease by listening to a patient’s lived experience than what is written in textbooks.

What’s in it for you?

Participating in a PAG gives you the chance to make a difference. You will:

• Share your story and trial experience (if a participant)
• Help identify treatment barriers
• Brainstorm how to close gaps in patient education
• Provide input on patient-facing materials for education or clinical trials
• Help pharma understand the patient’s perspective to minimize discomfort on study participants

You will usually be financially compensated for your time in the PAG, including the time it takes to attend meetings and review materials. As well, because you are closer to the action, you may be aware of news or information about research for your disease early.

Is participation in a PAG right for you?

PAG participation is voluntary but it requires a time commitment. The number of hours you need to commit to depends on the PAG. During the meetings you will be asked questions about your personal disease journey. You will be asked for thoughtful feedback on materials or work that the company is developing. You may be given homework with deadlines.

What else should i know before I join a PAG?

Before you join a PAG, you will most likely be asked to sign a confidentiality agreement or a non-disclosure agreement. These documents ensure that the information you share and receive in your PAG work is kept confidential.

Although you may be compensated for your time, your participating is always voluntary. If at any time you are uncomfortable or unable to continuing to participate in the PAG you can leave.

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Do you have a story to tell? Do you have an interest in research and clinical trials? If you would be interested in being contacted to participate in a future PAG, please fill out this survey.