YW & happy new year 🙂

Thanks for this Carolyn- I am looking forward to reviewing this very comprehensive document. I would like to have a better understanding of how to use co-design in a variety of health care settings or other consumer situations

Jeanne

Completed survey - I'll look forward to seeing how this project evolves!

Thank you Annette. You are a great resource. Frank Gavin and others members of the PPAWG would probably welcome seeing this material. It should be considered as material for discussion at our March meeting. This was a topic that generated a lot of interest at the PiR course.

Agree

Patient engagement in Canada: a scoping review of the ‘how' and ‘what' of patient engagement in health research

When I tweeted it (from PAN) we got 110 clicks on the link - that must be a record!

Thanks Annette and all PAN members,

I find these 20 short pages are real gold. It may be about research, but why not apply it to every facet of PAN members' work? Improvement, policy, service design, evaluation, all of the activities that consume our amazing commitments for a better system.

Just last week, I heard lots about "Learning Health Systems". I do not think this can be accomplished without collaboration with full respect and recognition for our part in defining and achieving both "learning" and "health". How could it be otherwise?

I do believe that it is patients who are the key to connecting up the silos across all the hierarchies and organizational bureaucracies we encounter in healthcare. Our experience requires it for quality and safety.

Have you seen this to be true? I seem to regularly be introducing one professional to another because they have common interests but have never met and often have never heard of the other's initiative.

When we hear "patient-centred", it is all too easy for the professionals in medicine and healthcare to readily agree without changing their ideas or approach. When was medicine and healthcare NOT patient-centred, at least in the most basic sense of providing care to patients, their reason for being??

So real change means following these "Key Principles" below, I think. How do you see it?

Take a read, join the conversation here, bounce these ideas off your colleagues and networks, and spread the word. I would love to see an adaptation of these fundamentals well beyond "research" to become our foundation for collaboration with patients and care partners in Canada.

Warm regards,
Carolyn

Key Principles

**Sharing of power – the research is jointly owned and people work together to achieve a joint understanding

Including all perspectives and skills – make sure the research team includes all those who can make a contribution

Respecting and valuing the knowledge of all those working together on the research – everyone is of equal importance

Reciprocity – everybody benefits from working together

Building and maintaining relationships – an emphasis on relationships is key to sharing power. There needs to be joint understanding and consensus and clarity over roles and responsibilities. It is also important to value people and unlock their potential.

Hi Donna,

David is a treasure, perhaps the most insightful and articulate patient leader on the planet. I met him in 2011 through the Patient Voices Network in BC. They had the amazing courage to organize an annual gathering of volunteers, and brought David in as speaker, his only trip to Canada [we need to bring him back!!].

What a revelation! A dedicated meeting for dozens of patient activists, all networking in one room was pretty amazing. But David truly galvanized most everyone who attended. He validated what we did and how we dreamed of contributing real value to the healthcare system as we had encountered it.

David and I have now met on a number of occasions in London, when my patient activism has taken me there. He has been doing this sort of work for nearly 30 years in NHS England, starting out with mental health collaborations, but including policy, training and most recently true system transformation in Sussex musculoskeletal services (Brighton). His humility, understanding, generosity and respect for the lived experience of patients and clinicians truly shine.

PAN members will find much of interest in years of blog entries at futurepatientblog.com He knows many Canadian patient leaders through his twitter accounts @DavidGilbert43 and @DGPoet. David struggles with the stress of social media and is presently tweeting less about patient leadership and focussing on writing more poetry.

Thanks, Donna, for bringing David to PAN's attention. Everyone should read this blog as foundational for our work: Patient's Dozen.

Best wishes to all,
Carolyn

There's an article about this that has appeared in several papers. Here's the link

https://evidencenetwork.ca/making-our-pan-canadian-health-organizations-fit-for-purpose/

Thanks so much for these great insights! I really like the livestream idea from an accessibility standpoint.

Totally agree about opening up the door to more patient participation in conferences. Interesting idea of potentially having access to a pool of money for patients who have abstracts accepted by conferences.

Strikes me that this is going to require a strategic, multi-pronged, multi-organizational approach to get to a point where patients actually feel like they are truly included.

I will include your responses in our summary work along with what we heard on the twitter thread. We are clearly hearing a strong need for more patient voices at conferences. We would like to partner with patients in planning a process to take a step in that direction with the knowledge that it is just one step by one organization...maybe our small ripple can turn into a wave!!

Thanks again for your very valued input! Angela