Patient Partners

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

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.

Perspectives

Single Lens

The outsider’s experience of the healthcare system

Dual Lens

The insider’s experience of those working in the healthcare system

Family Caregiver

Those caring for someone who is ill or injured and receives health services

Patient

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
Group of people brainstorming ideas on a table

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:

  1. They make all the arrangements and pay for them. 
  2. 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. 
  3. 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.

PAN Members Community Guidelines


We want everyone to feel welcome on our PAN community site, so we’ve created these guidelines to foster the community we would like to see. By joining and participating in our Community, you agree that you have read and will follow these guidelines.

Within the PAN Community site and in our dealings with each other through other PAN initiatives:

  1. Be respectful. We all have a shared goal of making healthcare better for Canadians. The PAN Community may include people you work with or may meet in future. As members of PAN, we demonstrate respect in our communication, sharing and crediting of resources/knowledge and  in our interactions with each other and stakeholders from outside the PAN.

 

  1. Focus on a positive and collaborative approach.  Let’s work together to build strong relationships so we can achieve great things. Diversity of thought and sharing of perspectives is healthy – we won’t all agree on everything, but we want to keep an open mind to consider new ideas and change.

 

  1. Do not discriminate or engage in harmful activity. We value different ideas and opinions but there is no place for any activity that could hurt someone, whether it’s physical, emotional, mental or digital. Racism, hateful language, or discrimination of any kind is not acceptable. Don’t post anything you wouldn’t want everyone in the world to know about or that you wouldn’t want anyone to know that it came from you.

 

  1. Use your true identity. We made this community site private so that we can feel free to be ourselves. Each member is vetted by our team to ensure people are here for the right reasons. Communicating with each other is based on trust.

To ensure the PAN community remains a safe place for all members, we ask you that you contact [email protected] if you encounter a situation where guidelines may have been breached. PAN reserves the right to suspend or terminate membership in the Community for anyone who violates these guidelines.

 

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Directives de la communauté des membres du PAN


Nous voulons que tout le monde se sente bienvenu sur notre site Web communautaire de PAN. Nous avons donc créé ces directives pour aider au développement de la communauté que nous aimerions voir. En rejoignant et en participant à notre communauté, vous acceptez de lire et de suivre ces directives.

Sur le site de Web de la communauté de PAN et dans nos relations mutuelles dans le cadre d'autres initiatives de PAN :

  1. Soyez respectueux. Nous partageons tous l'objectif d'améliorer les soins de santé pour les Canadiens. La communautéde PAN peut inclure des personnes avec lesquelles vous travaillez ou que vous pourriez rencontrer à l'avenir. En tant que membres de PAN, nous faisons preuve de respect dans notre communication, le partage et l'attribution de ressources/connaissances et dans nos interactions les uns avec les autres et avec les parties prenantes extérieures de
  2. Se concentrersur une approche positive et collaborative.  Travaillons ensemble pour construire des relations solides afin de réaliser de grandes choses. La diversité de pensée et le partage des perspectives sont sains - nous ne serons pas tous d'accord sur tout, mais nous voulons garder l'esprit ouvert pour envisager de nouvelles idées et des changements.
  3. Ne faites pas de discrimination et neparticipez pas à des activités nuisibles. Nous apprécions les idées et les opinions différentes, mais il n'y a pas de place pour les commentaires susceptibles de blesser quelqu'un, que ce soit physiquement, émotionnellement, mentalement ou numériquement. Le racisme, les propos haineux ou la discrimination sous quelque forme que ce soit ne sont pas acceptables. Ne publiez rien que vous ne voudriez pas que tout le monde sache ou dont vous ne voudriez pas que l'on sache qu'il vient de vous.
  4. Utilisez votre véritable identité. Nous avons rendu ce site Web communautaire privé afin que nous puissions nous sentir libres d'être nous-mêmes. Chaque membre est accepté manuellementpar notre équipe pour s'assurer qu'il est là pour les bonnes raisons. La communication entre nous est basée sur la confiance.

Pour s'assurer que la communauté de PAN reste un endroit sûr pour tous les membres, nous vous demandons de contacter [email protected]  si vous rencontrez une situation où les directives ont été violées. PAN se réserve le droit de suspendre ou de résilier l'adhésion à la communauté de toute personne qui enfreint ces directives.

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