For review and comment - Making Stories Matter presentation

[A Former User]

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.

[A Former User]

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.

[A Former User]

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

[A Former User]

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

[A Former User]

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.

[A Former User]

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

[A Former User]

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,

[A Former User]

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

[A Former User]

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

[A Former User]

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

[A Former User]

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!

[A Former User]

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.

[A Former User]

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.

[A Former User]

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

[A Former User]

I sent you a direct message Alies.

[A Former User]

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

[A Former User]

Thanks Gail, I'll take a look

[A Former User]

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

[A Former User]

I think it sounds like a great plan