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.

Are there any news or improvements in having partners as co-researchers in basic science?
I would like to know how a partner can contribute to that aspect of research.

Great to hear from you. The HIV/AIDS Community has been so persistent and active over a much longer time than most groups, and have had results that have made a huge difference.

The deadline for the survey is pushed back to Dec 3 so it's last chance time. It will be so good to hear from patients and caregivers about what they do, and how they got into it. Some real world data from the people who really know about patient engagement

Annette

Hi Annette I am meeting with Lori via zoom this week. Thanks for putting it out there the importance and benefits of using patient partners.

that's fabulous - bravo to you ! Please do share it, Donna

Many thanks Sandra & Julia for your responses.
One suggestion for roll out I have is that all stakeholders, at some point i.e. the project sponsors, leaders, HEC, NHEN, etc.. AND patient partners participate "together" in sessions learning, discussing this initiative. Whether in webinars or group meetings, "acting" as partners from the roll-out outset has many advantages: sharing, discussing various stakeholder toolkit perceptions will break down perceived barriers, gaps that we know currently exist between partners. It would level assumptions and simplify the communication playing field, making it clear to patients how they can best contribute and employ their value while equipping sponsors, leaders, with more insights into patients' circumstances and their real underlying wants and needs.

Including both partners in a rollout, will facilitate discussions on toolkit use, reveal perceived benefits, concerns which can be explored. Mutual understanding will promote their ideas for any modifications as necessary. Following this, in the toolkit application, the partners will discover what works well, what needs adjusting while experiencing the benefits and improvement outcomes. They will also identify ways for using the toolkit which will enable continuous learning and improvements. Maybe most importantly, this partnership in toolkit utilization will lead to more effective, productive, meaningful work, partners' satisfaction and ultimately, health care system improvements.
Again, thank you.
Denyse

Many thanks Annette for sharing this Health Research-Road Map.... I took the tour , finding the visual very helpful, along with the ability to click on points to learn more..... Believe this will be a tool patient and health care should review and work with and on "TOGETHER"...we can only benefit by building better realtionships i.e. closer ties and trust , an essential ingredient for relationships. Provided input to the survey which accompanied the map and look forward to being apprised, up-dated on future iterations. Appreciate your involvement on this project. Denyse

Good for you. Several (many) years ago I was helped write plain language summaries of research apps. PLS summary of the entire project is a big deal. I find good summaries on news feeds such as Medscape and Healio. I think they are meant for the average citizen, but I think they are still written at a level that one needs to have a fairly good grip on medical terminology, research process etc. I find most of the time when I want to read the original research it is NOT open access, so just get the abstract.

Hi Sandra,
Glad you enjoyed your SPOR project.

Digital Storytelling can be an important way for patients to share their experiences.

The program that I was in, provided by a SPOR team, did not provide any forms for permission to release as far as 3 weeks into the project, and I dropped out, as I mentioned in my original post.

Creating standards so that patient partners have knowledge, control, and signed consent about disclosing their personal private healthcare information at the outset of a partnership, whether it is for research or for a workshop to create digital narratives which may be used by that SPOR team, is the item of concern here.

Best regards,
...Susan

Hi Jeanette
If you go to EvidenceAlliance.ca and click on their menu you will find it under the heading Submit a Query. Maybe urls are a bug right now?

I hope that helps.

Annette

@Jeanette-Smith
[https://sporevidencealliance.ca/submit-a-request/suggest-a-health-topic-for-research-en/](link url)