Patient Engagement

The momentum for including the public in the work to improve healthcare is gaining speed.

A bit of history

Around 2010 in Canada, we started to see Patient and Family Advisors (PFAs) at local hospitals become popular. Resident and Family Councils have been in place in long-term care facilities in many provinces and territories for even longer.  And more recently we see citizen councils at local health authorities, at quality councils, at health professional bodies, and other types of health organizations.

In research, we started to see patient partners on research teams promoted by the Strategy for Patient-Oriented Research (SPOR). Read more.

Some disease-based organizations have had active groups of patients for years. Some examples, HIV/AIDs, and mental health.

Around 2018, the term “patient partner” becoming more widely used for PFAs.

We can learn from each other. And we can help embed the practice of involving the public in working toward a better future for the health and wellness of Canadians.

Hospital Hallway

Structures of Patient Engagement & Partnership

Patient partners are invited by healthcare organizations to join in the work to improve healthcare. Here are the two main models for how patient partners are managed:

The Main Type of Patient Engagement

The Main Type

In many cases, healthcare organizations have a “Patient Engagement” representative member or group. This team or person may have a different title, but their main goals are to: 

  • Recruit patient partners
  • Orient partners to the organization
  • Prepare and support staff while working with partners– take requests from internal working groups
  • Assign patient partners within the organization

A Secondary Type

Some organizations arrange a roster of patient partners to make them available to other organizations or groups. These organizations arrange all the patient engagement functions on behalf of what they refer to as their clients.

In British Columbia, the Patient Voices Network administered by the BC Patient Safety & Quality Council is a good example of this. It provides advisors on request for many healthcare organizations and groups throughout BC.

Health Excellence Canada (HEC), is another example where the pool of advisors is used for healthcare clients.  Increasingly, health authorities also have pools.

Since the start of the SPOR initiative in 2011, research teams have more and more welcomed patient partners on to their research teams. Often these are people the researchers know. Or researchers may go to their regional SPOR unit for patient partners.

Patient partners in research are not the same as patient participants who provide their data to the research team for analysis.

A Secondary Type of Patient Engagement

The Practices of Patient Engagement

Traditionally when hospitals, health authorities and other healthcare organizations involve patient partners, they create

  • a pool of patient and family advisors (patient partners)
  • a Patient and Family Advisors Council (PFAC)
  • or both a pool and PFAC

And they dedicate patient engagement staff to recruit, manage and assign the patient partners.

This is the practice of engaging patients.

For patient partners and the healthcare partners they collaborate with, their focus is the work they do together. This can be project work where there are a couple of patient partners on the team.  Or it can be the PFAC or council where projects are brought to the council for consultation.

This is the practice of collaborating as a patient partner with healthcare partners.

To support these collaborations, the healthcare partners may be trained by the patient engagement professionals.

PAN was formed to provide a place for current and potential patient partners to support and learn from each other about the practice of collaborating.

Patient Engagement Triad Diagram

This is the practice of fostering an engagement ready environment.

Patient engagement professionals may advise their organization on policies to support patient engagement.  They may also educate decision-makers and those collaborating directly with patient advisors.

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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