Thanks Amy, I am a co-author on the study, so pleased to see you post it.

(Maybe not co-author but collaborator or patient partner - not positive)

Annette

My feeling is that as patient partners in research, we need something of a "job description" for each project detailing out what we will do and when this occurs in the project; whether we are going to be cited as a co-author or contributor and what that means and how our name/relationship will be used.

I, too, have experienced similar situations to Annette's where my name is used with the wrong affiliation; or where I have done substantive work on something and I am not acknowledged and so on. It is messy out there but I truly feel virtually none of this is due to ill will but due more to a lack of knowledge and in some cases outright incompetence in running a project.

I am interested in what we think patient partners need to be trained up on and one element is the possible roles we can perform as a partner in research. This is to Susan's point about knowing what being a collaborator can mean specifically.

Alies

Denyse, I'm again re-reading this thread. I love your approach and think it is great advice for newcomers to being partners in research:

"The key is listening, observing and asking questions that bring the discussions back to the question - is this putting the "patient-first" and if so, how? What are the benefits? How does this help, not help? Does it create any barriers, obstacles or leave gaps?"

I found during my first experience on the Research Management Committee evaluating grant proposals that asking questions from the patient perspective was a powerful way of re-focusing the group. It also meant I didn't feel the need to be expert.

Keep us posted on your progress. Also, check out the course on PiR under Opportunities. It is a good one that involves lots of discussion online. Cheers! Alies

I agree. I realize that there is a genuine interest on the part of HCPs with some being responsible for starting support groups such as Type 1 Diabetes Think Tank and doing so very successfully. Working with patients directly over time has resulted in sincere empathy for patients and a real desire to make a positive difference for those living with challenges in their daily lives. I believe research dollars are much more likely to result in better outcomes when research addresses patient's voiced challenges. I think that those researchers who have access to blogs or or support groups are in a better position to identify and seek to research patient's articulated needs. It seems like a good research topic to develop strategies that yield genuine patient engagement.

I took this online course last year and found it very interesting. The presentations were well done and stimulating and unlike most online forums,there was lots of exchanges of information between participants - it made me think about how much this area has evolved and how it is current evolving as people's perceptions change about the value of patient engagement

YW & happy new year 🙂

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.