Join our community and meet others like you who want to improve healthcare as patient partners or patient and family advisors.
By coming together, we can learn from each other and have a greater collective impact!
Our community has:
- A community-only discussion board
- Opportunities for involvement
- Notices of conferences, webinars and workshops to learn from
- Community-only library (coming soon)
We welcome current patient partners and those wanting to become patient partners. Please note, for the discussions to be free and frank, we do not accept anyone whose job requires them to recruit, place and manage patient partners.
There are no fees and no obligations; fill out the Membership Request form.
If you want more information before requesting membership, please contact us and we will be happy to respond.
Top Ten Insights into Citizen Engagement: A Canadian Perspective
Hear our PAN colleague, Carolyn Canfield, share her deep insights into citizen engagement in healthcare with François-Pierre Gauvin, Senior Scientific Lead, Citizen Engagement and Evidence Curation of the McMaster Health Forum, McMaster University.
What perspectives do you bring
Each of us may bring more than one perspective from our experiences. Choosing a patient partner should be an informed decision, based on an understanding of the perspectives of each patient partner. When sharing, be clear which perspective is informing your comments. Each perspective brings value.
The outsider’s experience of the healthcare system
The insider’s experience of those working in the healthcare system
Those caring for someone who is ill or injured and receives health services
Those who have received care from the healthcare system due to illness or injury
Where are we involved
We work in…
- Quality improvement and safety
- System changes and policy
- Research as partners on research teams
- Healthcare professional education
- Boards of healthcare organizations including professional practice associations
- Anywhere we can make a difference
FAQs About being involved as a patient partner
*NEW* Q. How do I get started on PAN's Community Site?
A. PAN’s Community Site is private and only accessible to PAN members. To get started, consult this the How to get started on PAN’s Community Site guide here.
Q. Will my participation expenses be covered?
A. For meetings, most partnering 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 may be able to pay for travel and accommodation. There are several ways this can happen:
- They make all the arrangements and pay for them.
- You make all the arrangements and pay for them. You will be reimbursed but usually not until several months later. Be prepared to carry these costs on your credit card for several months.
- They make the arrangements such as 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 find out 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.
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. This is starting to change. 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. More and more organizations recognize this and offer compensation. They also recognize that within a group, if patient partners 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 a part-time salary. Another issue arises if the advisor lives on benefits and cannot receive compensation without jeopardizing their economic stability. There is also the option to refuse compensation when offered and ask if the money can be directed elsewhere like a charity.
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.