Deciding When to Consider Becoming an Advisor
Q. Will my expenses be covered?
A. For meetings, most organizations offer transit and/or parking compensation. If meetings go over a mealtime, meals are usually provided. Any other expenses like hiring someone to care for a patient while you are attending a meeting, need to be negotiated up front with the organization.
If you are asked to attend a conference or out-of-town meeting by an organization or research group, they should be paying travel and accommodation. There are several ways this can happen. One, they make all the arrangements and pay for them. Two, you make all the arrangements and pay for them. You will be reimbursed but usually much later. Be prepared to carry these costs on your credit card for several months. Three, they make the arrangements like hotel bookings but you are expected to pay and then get reimbursed. Be sure you understand exactly how this will work beforehand, get the proper forms and know if there are any deadlines for submitting the forms for reimbursement. Feel comfortable asking for help with this from the sponsoring organization. If you do not have a credit card, explain this to your contact. This should not prevent you from attending.
Q. Am I expected to know about the subject of the meeting in advance?
A. Usually if you are expected to have some knowledge ahead of time, the organization will provide it to you. Feel free to ask your contact person if there is something you should read. Most of the time, you are expected to provide your perspective and insights based on your experiences. No doctor or nurse can imagine how it is to go into hospital for the first time for example, because they are already familiar with the place. You will see things about living with a disease or condition and about experiencing services that the professionals cannot see but want to understand. These are very valuable contributions.
Q. What if I can't attend a meeting and need to cancel?
A. Call or send an email to let your contact know as soon as possible. If you are on a council or group that meets regularly, there may be a requirement that you attend a percent of all the meetings - for example 75%. If it looks like you may have trouble attending regularly enough, meet with the organizer to discuss it and determine if you can or should stay in the group.
Q. Are advisors ever paid for their participation?
A. This is a tricky one and a subject of much discussion. Initially advisors were volunteers. Most remain so today. However, some of us contribute a very great deal of time and expertise and feel, in some cases, it is appropriate for us to be compensated. Some organizations recognize this and offer compensation. They also recognize that within a group, if patient and family advisors are the only ones not paid for their time, there is a power imbalance.
Compensation can be in the form of a gift card or other item of recognition. It can also be money - an honorarium or consulting fee or even part time salary. Another issue arises if the advisor lives on benefits and cannot receive compensation without jeopardizing their economic stability. The Change Foundation has a guideline to help assess when compensation is appropriate.
Q. What should I wear when attending meetings or working groups?
A. Generally the healthcare world is less formal than the traditional corporate sector. If you are in a clinical setting, the staff and professionals are wearing casual and practical clothes. Most of us choose "business casual" or whatever is comfortable. No one will expect you to be spiffed up. It is your perspective and experiences that will matter most.