For review and comment - Making Stories Matter presentation

[Alies Maybee]

I just sent this blast:

All: Some of us on the Steering Committee have been working on a short 7 minutes presentation on telling our stories called Making Stories Matter. This presentation is also stored under Share > File Cabinet > For Members Review.

We would love it if you could comment on the slide show and the speaking notes. We need to deliver the slides by Oct 3 so please send the comments before then. The content and notes were influenced by the discussions we have had on Groupsite so thank you all for participating in these.

We will deliver this at the Health Quality Transform conference in Toronto on Oct 24. This is not a formal PAN presentation but rather a presentation coming from some PAN members with input from all who want to contribute.

The final version will be posted here so that you can use it as well or parts of it as you see fit. We hope to do more of these types of presentations and encourage any of you to approach the Steering Committee members if you have an opportunity to speak and want to run ideas or drafts by us and/or the other members.

Any other ideas you have about how we can help and support each other are also welcome. Cheers!

[Bill Holling]

The presentation looks good. The important part of telling a story is what was learnt. Often the story is told and then the meeting moves on to something else, so that was a total waste of time. The story can be a very good learning tool, in each story there is a positive or negative issue .The story should be talked about and groups need to learn this not just a part of the agenda.

Hope to see you at HQT

Bill Holling

[Donna Thomson]

Hi Alies,

The presentation looks great! I just have a few comments.

1)You circle this quite a bit, but I wonder if it's worth refining a simple statement such as "Before you begin preparing your presentation, you must understand its intended purpose for the audience. What do they hope to learn from your experience? The answer to that question will determine which story to tell and experience you will share."

2. Should a caveat be stated up front? Something such as "I will tell you what I felt/thought at the time of my illness. My story will be an opportunity for all of us to reflect on the gap between intended outcomes and my experience."

3. I don't know what others think, but I believe that if someone is invited to share their patient experience and the host does not identify a clear purpose, then I think it's fair game for us to propose a learning objective.

4. Re should we include other life events that effect our own illness narratives? I believe the answer to that question is yes - but use these judiciously for maximum meaning and impact. Eg, when my son had his first seizure, I was extremely upset because I had witnessed my father (post-stroke) have a seizure when I was a child, home alone with him. I shared this with the neurologist and she changed her demeanour.

5. Slide 8 - on positive outcomes of patient presentation: I think it's reasonable to ask for specifics on this. This is part of our patient and family activism. We may need to push on this to get clinicians thinking about actively and meaningfully leveraging our input.

6. Slide 10 - This may be too much but I thought of Arthur Kleinman's Illness Narratives and this passage in particular - use if you like it.

The chronically ill (and their caregivers) often are like those trapped at a frontier, wandering confused in a poorly known border area, waiting desperately to return to their native land. Chronicity for many is the dangerous crossing of the borders, the interminable waiting to exit and reenter normal everyday life, the perpetual uncertainty of whether one can return at all. To pass through this world of limbo is to move through a “nervous” system, a realm of menacing uncertainty.
For some the passage is not so difficult; for others it becomes routine like so much else in life; yet for others it involves despair at being stuck in a place one has come to hate and fear. This image should also alert us to the social nature of chronicity: the entrance and exit formalities, the visas, the different languages and etiquettes, the guards and functionaries and hucksters at the border crossing points, and especially the relatives and friends who press their faces against windows to wave a sad goodbye, who carry sometimes the heaviest baggage, who sit in the same waiting rooms, and who even travel through the same land of limbo, experiencing similar worry, hurt, uncertainty and loss. Social movement for the chronically ill is back and forth through rituals of separation, transition and reincorporation, as exacerbation leads to remission and then circles back to worsening and so on. (The Illness Narratives, 1988)

[Alies Maybee]

Bill, thanks for your encouraging words. Yes, absolutely our stories have to matter within the context of the telling.

We will be talking (for all of 7 mins!) at HQT (Health Quality Transform) in Number 14 - Spotlight on Abstracts: Using Technology and Data to Make Improvements as the second of six presentations. Hope we are not lost in the crowd!

If you are coming, there is a lunch for advisors that I hope the registration is still open for. I will be there and hope to meet you if you attend. Cheers! Alies

[Alies Maybee]

Donna, thanks for the detailed review.

I've added your points 1, 2, 4 and 5 to the notes.

Re: point 3 - I agree. We have the right and the obligation to clarify the purpose of telling the story.

Re: point 6 - it is too much since we have such a short time - regrettably. It is a very eloquent description of living with chronic illness.

Thanks for taking the time. This gets better and better with all our collective wisdom.

[Donna Thomson]

Hi Alies,

I agree that Kleinman's quotation is far too long, but it's one that might be good for some future use. I think it demonstrates how far apart we are from one another before the storytelling begins. I'm not sure that people working within the system really know very much about how it feels to be on the receiving end. Case in point, Sue Robins' blogs on her breast cancer experience.

PS: I'm a newcomer to this group, so I hope my comments hit the right tone. Reading and reflecting on this gave me respite today - I'm in ICU with my son who had surgery last Monday.

[Alies Maybee]

Donna, I was very struck by the quote and agree it could be used in future. Perhaps we can mull over how and where.

I'm sorry to hear you are undergoing a vigil in the ICU with your son and hope all turns out for the best. I have never gone through that with a loved one since I was the one in the ICU so I can't imagine how unreal/anxiety filled/painful that might be.

Your comments are very welcome. As experienced and new advisors, we may not all agree on everything (being human) so the point is to have respectful but meaty discussions and explore the various issues we struggle with as we engage with the system and its players to hopefully make it better.

Again, thanks, and thinking of you. Alies

[Bill Holling]

Sharing stories can be a very moving and learning episode as I sais earlier having an open discussion is an important part of the process. Please keep in mind that Alies has 7 minutes in a room full of chaos with one speaker wrapping up, your waiting your turn and the next speaker is right their for their turn.

I think it would be best if we let Alies make her presentation as is and then as a group put a major effort to study patient/ family stories and their value to the system. Many times the stories don't go any farther than the meeting they are presented at. Is there a way we can take those stories and find the benefits of them. Over the years I have looked at the story telling in meetings and wondered what was the point or what kind of information we were missing that could have been passed on.

It is a boost to a person who is going through serious health challenges when they can hear other people are going through similar problems

Bill Holling

[Donna Thomson]

Thank you Alies and good luck with the presentation - it's so much fun to participate in these discussions! Thank you for the opportunity to participate and play with ideas. This is our son's 79th hospitalization. He's had some rotten luck in his life, but he remains totally positive with his dark humour intact.

[Alies Maybee]

Virginia, thanks for the reminder. I'll share it with Annette my co-presenter. We will have to practice being snappy since 7 mins fly by. Cheers! Alies

[Gail Bellissimo]

Best of luck with the presentation Alies & Annette -

From my experience, knowing your audience, knowing your message, having a peer or very knowledgeable contact associated w/the event are essentials.
Reflect on the request and the content before saying ‘yes'.
Making stories matter - it is the responsibility of the requester to:
- support the speaker and collaborate/check in as necessary, and be available to answer any questions.
- provide a clear understanding of ‘why' they feel a patient/family member speaker will enhance their event. Advising you they "just want to hear about your experience" or "whatever you want to talk about would be great" might be flag.

It is the 'our' responsibility to ensure we understand what is involved, do research, ask all questions.

Authentic, intentional engagement is a collaboration & when it happens you will 'feel' it.

Be well,

[Alies Maybee]

Gail, thanks! I like your emphasis on reflection before saying yes. I'm not as good at that as I should be.

I also think you have "flagged" the language that triggers the thought of a token engagement.

I've added your notes to the notes of the slides. Take care yourself, Alies

[Virginia McIntyre]

HI Allie

I think this will be helpful. I think this is something I will refer to.

I agree Know your audience, as slide 5 states " to whom".

The only thing I like to add to your fabulous power point is when I did the patient advisor training session on telling our stories they emphasized that the key learning point should be mentioned 3 times throughout the story to make a lasting impact.

Thanks for asking our input.

Virginia

[Annette McKinnon]

I'm so happy to read your points of view and to learn that our collective knowledge about stories is so deep. I really think this will be helpful for our (very) short presentation.

Just yesterday at my hospital Community Advisory Council I had the opportunity to give feedback on a video of a patient story. You know the drill I'm sure. "We start every meeting with a patient story."

I told them that every patient story is told because of the facts at the heart of it, and because patients want to see change. So the question I gave them was "What are you doing to look at the stories, to look at the issues and to make things different."

Maybe it will help, bit by bit.

Annette

[Laurie Proulx]

Well said, Annette. The story is a stepping stone to action. I use story telling quite a bit and try to relay how it links up to broader issues within our health care system. For example, coordination of care, compassion, difficulties in diagnosis, awareness, etc. I often try to corroborate how my experience often mirrors others stories as well. This is why it's so important to have a broad network of people with illness in our networks to continuously validate our working assumptions. Just thought I'd share my experiences and I think the presentation looks great!

[Alies Maybee]

Laurie, thanks for sharing. This presentation, although only 7 minutes, gets richer and richer with everyone's input. Stay tuned for the final slides and the draft notes.

[Susan Macaulay]

Dear everybody,

I'm delighted to have joined this group in the last week.

Prior to 2011, when I became the primary care partner to my mom who lived with dementia, I was a public speaking and presentation skills coach and trainer for 20 years.

Obviously the deadline is past for commenting on this particular presentation, but I would be happy to help / advise / counsel with respect to others in the future.

I'm pleased to see plenty of good ideas in the thread.

[Alies Maybee]

Welcome, Susan. While we have closed off the slides and sent them on to HQO, we can still tweek the actual talk. Alies

[Susan Macaulay]

I sent you a direct message Alies.

[Gail Bellissimo]

Welcome Susan, I'm sure you are perusing many of the threads, and not sure if you have had a chance yet to see the one "Telling Our Stories So that They Matter". With your experience, you may have a great deal to contribute.

I think we have only seen the tip of the iceberg on this great discussion.

Be well,

Gail

[Susan Macaulay]

Thanks Gail, I'll take a look

[Alies Maybee]

All: We have taken your feedback and merged it into the notes. Annette and I will be taking some presentation training with Susan Macaulay to refine our delivery on Oct 18. This will probably lead to our needing to trim the notes. Once we are done, we will post the final version for you all to see.

With all the marvellous discussion and feedback on telling stories, we have enough for a workshop. This could be delivered to our members and also be available for members to deliver. What do you all think? Alies

[Susan Macaulay]

I think it sounds like a great plan