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.
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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!
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Hi Alies,
As this is an anonymous survey (I think!), I just wanted to say YES I am interested in helping with this!
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Super, Kerri! I've alerted the sub committee to your interest. Cheers! Alies
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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
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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??
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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.
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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]
PAN CONNEX - Fall 2018 Eng and Fr .pdf
? 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 -
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
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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
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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
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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!
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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.
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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:
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what to do when you feel you are in a tokenistic spot? Do you leave, get angry, stick it out?
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How to you pick elements of your story that might be relevent to the task at hand?
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How can you go about getting the back ground and info you need to do the job?
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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
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Alies,
i recommend looking at Health Quality Ontario’s website they have some good guides for this type of thing.
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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.
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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
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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.
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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.
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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”.
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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.
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Thanks for clarifying. Yes, absolutely we should point to existing resources within the system. And we can learn a lot about peer support from those experienced with it as some of our team are - but not me. Cheers! Alies
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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.
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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.
Sent via Groupsite Mobile.
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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.
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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!!!
Sent via Groupsite Mobile.
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Happy to help with this project. Let me know when and how.
Sent via Groupsite Mobile.
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Thank you Emily. I understand. Been there. I can help too! Kim
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Dear Emily, happy to help with creation of orientation. Have sent you an email.
thank you
Kurtis
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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. -
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!
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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
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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
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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.
