Interesting tips and details of curriculum used by this group of researchers in the US to locate and orient patient partners. Some of this might be useful to us in the research area.

[A Former User]

We recently responded to a survey that collected information about what should go into a PA curriculum for orientation. Have the responses been summarized?

It would be timely to have this information for our new health authority in SK.

On another note: Let's also be mindful of the importance of promoting and advising on achieving health in our communities. Often the focus of discussions is on hospital care: treatment, illness care, chronic disease management and end of life care. Public health is also part of our health authority. Instead of metrics that measure patient satisfaction with their hospital experience, let's see success as a reduction in hospital admissions.

[A Former User]

Hey Kim. I have been advising here in SK for the past 9 years and we do have a provincial orientation that was based on the work we started in Saskatoon years ago Really looking at the key tools of PFCC and patient first review that is foundation for us here in SK. It is this deeper dive into the four pillars and undersntding the role of being an advisor that is so crucial. For many advisors don’t get this basic orientation. I know many haven’t used this in a bit but we do here in Saskatoon still and it helps those starting on their journey as advisors. What we need to next to is to revamp it to ensure it’s meeting the needs of advisors today. Especially taking a look at what you discussed. Happy to chat more and seeing what we can do here in SK.

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[A Former User]

Hi Heather! I admire your work and sage advice. Good points. I'm curious if anything new came out of the monkey survey the PAN community developed. The role has to be continuously under construction, I suspect, given our changing landscape.

[A Former User]

Hey Kim. I am too. Let’s hope Alies and all reply and let us know.

Thanks for all you do to ensure the patient and family voice is heard.

Let’s chat soon!!!

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[A Former User]

Thank you for this informed and insightful discussion all! I am Emily and I am one of the members on the orientation committee. I must apologize for the delay with messaging in the group and with updating everyone about the survey etc. We had quite a good response to the survey and the other committee members and I are going to pull out key learnings and themes and then I will report back here in order to validate and discuss before moving forward with a draft orientation (we do have a couple of decks going with potential materials but these need to be revisited in light of the survey and the feedback in the group chat. I am rather oversubscribed with work and my almost two year old currently but should be able to do more in April and will circle back here ASAP. In the meantime if anyone would like to speak further with me about content then please message me at emilynangl@gmail.com.

Thanks again for everyone’s input and enthusiasm!

Warmest,

Emily

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[A Former User]

Happy to help with this project. Let me know when and how.

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[A Former User]

Thank you Emily. I understand. Been there. I can help too! Kim

[A Former User]

Thanks for the offers to help! It will be great to get a few more members involved in the creation of the orientation. I will start by compiling the survey data and comments so I can report back and then maybe we can arrange for a group call? How does that sound? If anyone wants to talk one on one sooner though please email me - emilynangl@gmail.com

Emily

[A Former User]

Dear Emily, happy to help with creation of orientation. Have sent you an email.

thank you

Kurtis

[A Former User]

Hi all,

This is my first post. I am interested in the group's ideas about orientation and the principles and concepts that might emerge. I volunteer my time with IMAGINE Citizens Collaborating for Health and I co-lead from the citizen side, a project called Healthcare 101. http://imaginecitizens.ca/hc101/ We initially started out as planning to do patient/public member orientation for our mutual organizations (IMAGINE) and AB's Strategic Clinical Networks, who wanted better systems orientation for volunteers who asked many questions to guide this...What we quickly learned when we reached out to people in Alberta more broadly though to get this figured out was that these are more universal questions, not just for those who step forward to volunteer their time (for whatever reason) but also for the general public (and many health providers and health organizations too!). Questions desired in 'orientations' themed around our four topics: What are the basics of how the health systems are structured, how do I navigate/find my way? how do I advocate for myself? and what are my rights? So basically the problem is bigger than what should go into an orientation, because we were all feeling stuck or siloed/sheltered about how things work in the first place. And of course there are huge inter-provincial/intra-geographic variations, so we ONLY tackled provincial, not federal services so have left out a lot..

Through IMAGINE's efforts and partnering with many other patient advisors and health orgs, we were able to publish the first topic June 2018 https://myhealth.alberta.ca/HC101 on our province's health portal, MyHealth Alberta which is where our provincial access to our health record is located. (not perfect by any means but a start) We're doing evaluations of topic one (exploring cultural appropriateness and new user opinions and youth -led options) and doing ground work for the next topics...

So I would love to learn more about how group members see peer created vs co-created orientation resources emerging. How do you see population-wide efforts vs 'in-house' specific/tailored orientations? I've been on both sides of this in my previous work lives. I think that peer-led but co-created population wide orientations are what hold biggest hopes for success in leading ways forward to mutually valued/trusting relationships, shared decision-making at all levels, and better health / safer healthcare. But of course it is slower Have a wonderful day all. I am enjoying reading an learning about everyone's work.

[A Former User]

I am very interested following this discussion as well. I am wondering if the term 'advisor' has some inherent assumptions. IN our capacity building work - I am also involved with IMAGINE Citizens Collaborating for Health in Alberta - I often think framing this conversation about 'building citizen capabilities' is perhaps closer to what I mean at least. It is not primarily about 'advising' someone else; it is about taking ownership and actually helping to shape the conversation; actually shaping what it is on the agenda for discussion and dialogue. I echo an earlier comment that alludes to needing to 'back up' a bit and think about an individual's or family's health or indeed the health of our community. Although the lion's share of money is spent in illness care, illness care is not actually the most important factor in determining health of me, my family or my community. This line of thinking may be beyond what was intended in this thread, and if so, just let me know!

[A Former User]

Love the discussion going on here! I think we are touching on some really key ideas, issues etc which will help us define how we want to proceed with any orientation or training. Reviewing the survey and comments we seem to have a consensus about wanting to create something novel, not only in that it will be created by patients/caregivers/citizens but that it will fill a gap in what is currently available. Also based on what I have heard it sounds like we want to build a core module which could be broadly relevant to help people prepare to be involved in various ways as a collaborator or advisor or contributor in health care. I think the simpler and more practical the better - we can include how to define (or how to understand the myriad of definitions of) we patient partner, patient advisor, patient and family council etc; some background to the importance of working WITH patients and families at all levels of health care (but told from patient perspective); how to search for opportunities; FAQ’s; generally applicable rights and responsibilities; some basics of dealing with conflict when working with teams; telling your story and learning from and drawing on your experience to help inform change; compensation ...and a few other practical aspects that people have suggested and that will be relevant to most public/patient members who get involved in some way. Because the consensus is we should not have anything too long or overwhelming, I am thinking we can then have different members or teams of members create more specialized resources on topics - for instance( from survey) Becoming a reviewer for grant proposals, health care social media generally /using social media, indigenous health/including indigenous perspectives in health care and health research, working with teams using online platforms (like Skype, zoom etc), co-design (what the heck is it, what are the different models), and others...These could be in the form of slide shares, pdf’s, podcasts and other media depending on what suits.

Not sure what people think here? I certainly think the more collaborative the effort the better. Do people want to let me know if they would like to try creating a resource on a certain topic? I am mindful that we are all busy with other things as well don’t want any one person taking on too much or feeling that being involved isn’t manageable!

Oh - and we also don’t want to reinvent anything that we think exists in an already well designed and thoughtful form. A good database of other sources of training programs and resources will be important too (also based on what we heard in comments). People have already made some good suggestions. Perhaps someone wants to take on this specific effort of creating a library?

Lots of thinking out loud here and nothing set in stone. I am creating a power point and notes on the survey results and should have it posted in the next couple weeks here for people to look at.

Thanks to those who have already offered to help. Not sure if we are quite at the stage for a group call but hopefully soon.

Will post again ASAP.

Best wishes to all!

Emily

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[A Former User]

I advise in Ontario in Mental Health and Addictions for 2 separate LHINs and am involved in the organization and planning of a few different Ontario Health Teams under the Ford Government. I’ve been approached about how to provide training to new lived experience persons to advise by speaking their mind with confidence, system knowledge, and knowing they provide valuable information.

My answer was better Mental Health Care. Before we can teach system knowledge we first must deal with the problems of anxiety, self esteem and self worth. If advisors are to anxious or fearful or do not have the self worth to speak up in a meeting to advise on their true experiences the system has failed in providing the skills required to manage these symptoms.

This is something that needs to be considered in training; self care, and a peer network or a contact person to talk to when the demands of Advisory work are a Burden. For myself with 10 or 11 committees at a systems level bound by confidentiality agreements knowledge can become a burden without self care or person(s) to discuss with.

i am interested in this project and am located in the GTHA.

Gwen

[A Former User]

Dear Gwen,

Thank you for your post. I am involved in a patient advisory role with several health care agencies, including my local LHIN. I do agree that mental health services need to be improved and person-centred care has to be enhanced. I also agree that patient advisors need a kind of support structure as well, as we are typically not employees of the health agencies to whose work we contribute.

Am happy to be involved in developing solutions in this area.

Thank you

Kurts

[A Former User]

I think it would be helpful to also have a sampling of the kind of activities our PFAs have taken part in at hospitals, organizations, boards, steering committees, conferences. Patients could share their experiences with others. This could be collected via a recordable Skype/video chat.