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]

I just sent this blast:

Our subcommittee for training and development is interested in knowing what you think should be in a training orientation for advisors. Please fill out this survey and let us know.

https://www.surveymonkey.com/r/S6VCN3F

(Ce sondage est en anglais pour le moment mais nous allons essayer de le faire en français bientôt.)

Many of us have been through the orientations that organizations give us. The ones I went through focused on the organization, its strategy and goals, the role they wanted us to play and so on. There is, however, so much about being an advisor that they can't tell us about.

What would you have like to know before you became and advisor?

For those who want to become an advisor, what would you want to know?

Help us identify what should be in a peer-created orientation. Cheers!

[A Former User]

Hi Alies,

As this is an anonymous survey (I think!), I just wanted to say YES I am interested in helping with this!

[A Former User]

Super, Kerri! I've alerted the sub committee to your interest. Cheers! Alies

[A Former User]

I'd really like to see education that puts our needs for information ahead of the needs of the organization that wants to 'educate' us.

In fact I don't think I've seen very much that is created be patients for patients. Why are our 'partners' always initiating the issues and we are the ones always providing feedback?

Annette

[A Former User]

Excellent question Annette. In other work recently, I have had to reflect on what ‘patient/citizen led’ means to me. My position for now is that patients/citizens need to actually craft the agenda for the topics that are discussed, and (if an organization) have to have ‘meaningful (if not complete) influence/control over resources (and I’m not referring to $5000 per year for an organizational entity....

Time for patient led groups to start ‘setting the agendas for discussion’... thoughts??

[A Former User]

In Alberta, we are working (with IMAGINE Citizens Collaborating for Health) to create something called ‘Healthcare 101’ which attempts to determine what Albertans needs for information about the health system are. So, we are not focused on developing excellent ‘patient advisors’ per se, although there are lots of them in our community. After speaking with about 100 ALbertans about what they needed to know, we have identified four themes for information:

Healthcare Basics

“Finding my way’ (navigating)

Advocating for myself

My rights

This initiative was proposed by IMAGINE and Strategic Clinical Networks in partnership, but we were one of the initiators. it has now attracted 5 or 6 additional partners to the efforts. The first module ‘Healthcare Basics’ is now posted on My Health Alberta. (Government hosted site for health information - Alberta Health was one of the partners who came forward after we got the initiative up and running.

OUr focus is more on developing ‘engaged and informed citizens/patients.. but in case of interest, am posting here.

[A Former User]

Hi Judy,

I've heard such great things about IMAGINE --so it's no surprise to hear about this fabulous and **imaginative** project! This is a beautiful guide for the Alberta public to figure out healthcare for their own care. Easy to navigate, nice graphics, great links to outside sources. Views healthcare from a patient point of view, whether included in the provincial health system or external (like ambulances or dental care).

HERE is the link to Alberta's Healthcare 101.

As a national network, PAN members might want to take a look and spread the word across the country. I wonder if our member's local health providers or provincial structures (like quality councils or professional orgs) might want to "borrow" what Alberta has developed? This format is so adaptable. And as patient advisors, we can be the bridge across the provincial boundaries that so often isolate innovation and creativity. Let's do all we can to remove these barriers. We don't all have to re-invent the better mouse trap --or patient literacy portal for our health systems.

Judy, I'd love to hear more about the team building to do the actual co-design in Alberta. Maybe you would be willing to open a new discussion topic, since it is outside this topic? Or write a blog for the PAN website or a short article for [PAN's newsletter CONNEX](http://patientadvisors.groupsite.com/file_cabinet/files/929298/download/PAN CONNEX - Fall 2018 Eng and Fr .pdf?m=1540151912)? Thanks for considering it. Something like "my experience with co-design". Maybe this has been written up for journal publication? Or conference poster? How much better to share design for effective collaboration than through our PAN network of committed patient advisors!!

As you suggest, the question for the PAN survey is what do patient advisors think is the necessary and ideal training to support our work in partnership as patient advisors for system level improvement. But I wonder now, how does Alberta Health Services support orientation and ongoing training for its patient and family advisors?

Anyone else reading this, can you share with PAN members how recruiting, orientation and ongoing support works where you live?

Best wishes to all.
Cheers, Carolyn

[A Former User]

Hi Carolyn

Many thanks for your comments! I appreciate them. I will share your message (and your request) with Troy Stooke who is a ‘made in heaven’ IMAGINE member who co-chairs the HC101 Task Force. They have done at least one poster presentation and I’m not sure about presentations. We are happy to share lessons etc. I would absolutely love it if there were an active citizen/patient led group in every province and territory.

Stay tuned. I’ll get back to you after discussion with Troy.

Judy

[A Former User]

I think this is a great idea and we also need an open forum to discuss issues that come up regarding committee work and how to proceed forward. Many committees/ research or/and working groups are unsure of our role. I am finding some get defensive with suggestions. One thing to have in the training is how to handle the admin staff not knowing our role and how to deal with the challenging HCPs who do not want us at the table or/ and do not see our role as a complimentary role.

Please add me to your list of interested PAN advisors to assist with this

Regards

Virginia

[A Former User]

This is not from me as a patient advisor, but from me as a reader of new PubMed papers. I was interested in this one:

The DREAMS Team: Creating community partnerships through research advocacy training for diverse older adults http://bit.ly/2AkZ4iW

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.

There were areas I was not crazy about, such as a line early on where they talk about the lack of health literacy among older adults, defined as people over 55!

Annette

[A Former User]

When on HQO (Health Quality Ontario) PFAC, a small team of us worked with UHNOpenLab and HQO to create a tool that we felt would help patients / patient advisors increase health literacy and enable them to navigate the system

Topics include - Role of the Governments, different kinds of services / settings eg LTC, Primary Care etc, Rights of Patients, Roles of Patients, The types of workers in the system, funding, Emerging trends etc

Although this tool is finally "ready" - the Ministry has asked HQO to hold off posting this tool to their website while they "continue to review their process".

Hopefully HQO will get a green light from the Ministry soon!

[A Former User]

I’m a little late for this discussion but I think it can depend on the committee. For something like Samira talks about, HQO PFAC, orientations can be quite involved. A PowerPoint presentation or adobe presentation hitting on the basics of the HQO PFAC topics, roles and responsibilities as an in person presentation, and it’s also good review for all committee members. To back this up an online reference binder or reference files providing the details for people to read in their own time.

Patients first act

excellent care for all act

abbreviations list

Tor and strategic plan

HQO QIP

Accreditation

other applicable legislation

The list can be very long for a reference binder but extremely useful to a new member.

[A Former User]

I know a lot of orgs do an orientation but in my experience they don't really get into how to be an effective advisor. I'm thinking of things like:

• what to do when you feel you are in a tokenistic spot? Do you leave, get angry, stick it out?

• How to you pick elements of your story that might be relevent to the task at hand?

• How can you go about getting the back ground and info you need to do the job?

• How do you broach the topics of reimbursement and compensation?

I have not found any training or orientation yet that covers this in this way from the peer perspective. Alies

[A Former User]

Alies,

i recommend looking at Health Quality Ontario’s website they have some good guides for this type of thing.

https://www.hqontario.ca/Patient-Partnering/Patient-Partnering-Tools-and-Resources/Resources-for-Health-Care-Providers/Get-Started-Working-with-Patient-Advisors

[A Former User]

Hello all

I am in Saskatoon and have done orientation with my organization for about five years and help to build the provincial orientation too. In Saskatoon we do a three hour orientation and do talk about how to be an effective advisor. It about conversations And taking time to help and mentor new advisors.

Sent via Groupsite Mobile.

[A Former User]

Gwen, I am familiar with the HQO website and their resources. The resources are overwhelmingly directed to Patient Engagement Professionals (PEPs) not advisors though there is certainly some helpful stuff there.

None of it is developed by peers for peers. It is a good demonstration of the gap we see in training/orientation for advisors. And there is definitely some materials there that are helpful from a practical point of view.

I am still looking for the peer stuff. Heather has mentioned that the orientations she does she includes some of the stuff on being an effective advisor, especially the material about the positive things like conversations etc.

Privately, many of us are approached by colleagues who are in difficult situations and want to know how to deal with them. Or there is disclarity. Or their circumstances change and they want to readjust their commitments.... etc. These are areas we need to help each other beyond the one-on-one. There are some of us who never run into these challenges but many do and need help navigating. Cheers! Alies

[A Former User]

Alies,

the only other resource I can suggest is http://www.centreforinnovationinpeersupport.com/index.html

they are working on the resource section but are very experienced. They may be able to assist you.

[A Former User]

These are all very good topics for advisory training. I did take a PFA course through An American source: PFANetwork. It covered none of the above topics.

[A Former User]

I should add that I am working on a patient engagement training module for CCO staff. There are 4-6 PFAs actively providing guidance and feedback on how the staff can best engage with us. It is still a work in progress, but, we have all enlightened them on the need to have PFA involvement from the get-go on a project..as co-designers of the plan and not just as respondents to their plan. Hot topic since they are often the middle man for a pre-set Dictum from “above”.

[A Former User]

Alies, guess I’m not explaining myself appropriately. Why I mentioned the HQO and their guides are because they should be included in orientation as reference materials. New advisors need to understand who they are advising and how they operate. The HQO website has guides for standards of care for both patients and physicians as well as engagement guides.

Advisors need an an understanding of how the system works, including accreditation, HQO Quality Improvement Standards, scorecard data, who chooses the information to be included on scorecard.

You talked about a training and Development committee; the advisors I work with dedicate a lot of time to their own education of the health care system including those things I mentioned above. I believe tokenism is created when you can’t fully participate in the conversation. You don’t need to be a clinician to understand the concept of the system and comment and ask competent questions.

The centre for Innovation and Peer Support is new but doesn’t mean those running are. One is a Champion Advisor of opiates to make it a health crisis, another is an international speaker. This umbrella group provides peer support for peer supporters and also has patient advisor groups within the umbrella.

Next time I’m talking with the HQO Ombudsman as I’m on his Advisory group for a project I’ll mention the lack of peer to peer materials. Maybe we can start another project with him.