SPOR Summit

[Annette McKinnon]

The Strategy for Patient Oriented Research (SPOR) Summit is coming up on November 13th to 15th in Ottawa.

I'll be there for the first time ever, and wonder who else is going and would like to meet up. Hopefully there will be a time that we can make work for us.

It would be great to meet with Ottawa members too. Below is a draft agenda. I hear tere were a lot more panels that have been 'squished together' to make everything fit into 2 1/2 days

Info about SPOR Summit 2018

Mapping the Progress of Patient- Oriented Research in Canada

November 13 - Reception and Marketplace
15:30 - 19:30 Registration
16:30 - 19:30 Opening Reception and Marketplace - Posters 18:00 - Welcome and Introductions: MCs November 14 - Plenary and Concurrent Sessions 8:00 - 9:00 Registration and Light Breakfast 9:00 - 9:30 Welcome, Introductions, and Setting the Day Dr. Michael Strong 9:30 - 10:30 Plenary Session Changing the conversation - Sickboy Podcast 10:30 - 11:00 Break - Posters 11:00 - 12:15 Concurrent Sessions Session 1. "I never thought it would take me here": Investigators' and people living with HIV's evolving experiences of patient engagement working on a clinical study Session 2. Training and Capacity Building for Patient-Oriented Research ‒ It's Impact in Ontario Session 3. Reconciliation Through Research: Using a Two-Eyed Seeing Lens to Create Equality in Gathering and Sharing Indigenous Knowledge 12:15 - 13:15 Networking - Buffet Lunch 13:15 - 14:30 Concurrent Sessions Session 1. Patients experiences as partners in research Session 2. Translating Research into Practice Session 3. Innovative Approaches, Progress and Challenges in POR (French session) 14:30 - 15:00 Break - Posters 15:00 - 16:00 Plenary Session Keynote: Charlotte Loppie: Recipient of the CIHR Gold Leaf Prize in Transformation: Patient Engagement **November 15 - Plenary and Concurrent Sessions 8:00 - 9:00 Light Breakfast 9:00 - 10:15 Plenary Session POR from Indigenous Perspective 10:15 - 10:45 Break - Posters 10:45 - 12:15 Concurrent Sessions Session 1. Patient Engagement: Let Us Count the Ways Session 2. SPOR In Action Session 3. KAIROS Blanket Exercise 12:15 - 13:15 Networking - Buffet Lunch 13:15 - 14:30 Concurrent Sessions Session 1. Making impacts - SUPPORT Units Session 2. PIHCIN: Operationalizing patient-oriented innovation for collective impact within primary and integrated healthcare Session 3. Let's collaborate 14:30 - 15:00 Break - Posters 15:00 - 15:50 Plenary Session Keynote: Planning for sustainability - Dr. Diana Royce 15:50 - 16:00 Summary and Closing Remarks - MCs

[Dia Sue-Wah-Sing]

Can I get the Coles notes version of SPOR? The website was a little elusive as is typical for govt. website. Thanks

[Annette McKinnon]

I was writing a presentation about why researchers are engaging with patients, and used the bullets below for quotes. That's pretty brief but it has meant a lot of patients have been able to be involved with research at some level, depending on the team.

In the grant reviews I just did the applications had very cursory plans for involving patients - 12 of them, and most had one patient at best, but they were not SPOR grants. Using SPOR as a lever to move other types of research might help us.

"When you look at CIHR and the SPOR program, they say

• SPOR:: Patients need to be involved in all aspects of research to ensure questions and results are relevant;

• A central tenet of SPOR is to put patients first.... so engaging patients is an important component in the developing and implementing all elements of SPOR, including the research networks

• And also "At CIHR, we want to help transform the role of patient ... to a proactive partner who helps shape health research and, as a result, health care"

That's likely too brief

Annette

[Laurie Proulx]

I will be going for a part of the Summit. I wasn’t invited but presenting a poster with researchers on our project. It would be great to organize a PAN member meeting if possible ️

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[Laurel Radley]

I am coming to the Summitt from Vancouver and would be happy to get together with other members.

(I was invited as I was a volunteer abstract review committee for the summitt.)

Sent via Groupsite Mobile.

[Annette McKinnon]

I would love to meet people there. I am arriving on Monday in advance so likely paying for that night on my own. I am also not leaving Ottawa until Friday.

Through luck and planning our whole Ontario SPR Support Unit working group will be there and they want to plan a meeting too.

It's great to meet PAN members in person. I think our group is unique, and I have been so enriched by being a member.

Annette

[Annette McKinnon]

Great to hear that you will have so many. I'll hope to see you at the research poster. I was lucky enough to be invited at first because of a recommendation, later was invited by a research team I am on.

So I'll be pretty available, with no responsibilities to present anything, and looking for you. I'll be at the Courtyard by Marriott Hotel, neglecting my husband who is also going to be in Ottawa meeting up with friends.

What is your poster about?

Annette

[Candace Skrapek]

There will be several patient advisors coming from Saskatchewan Centre for Patient Oriented Research. It would certainly be great to have an opportunity to connect with others.

[Annette McKinnon]

What if we tried to get together on Tuesday night after the reception, or on Wednesday evening after the keynote which ends at 4:00? or maybe for dinner on of the nights?

We could meet at a restaurant in the Courtyard by Marriott.

If dinner doesn't work maybe we can meetup somewhere in the Conference centre.

I've never been to either place before

Annette

[Laurel Radley]

Perhaps Wesnesday as it would be earler? Then those interested in a meal could dine together. I would be happy to meet at any of the suggested times.

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[Annette McKinnon]

Hi Laurel

Wednesday sounds like a possibility then. Here's my email so we can try to coordinate:

a.mckinnon@sympatico.ca and my cell is 647-519-0418 to help us to find each other.

Kathy I always wanted to attend the SPOR Summit but had no way to find out how. A friend on one of the research networks suggested my name to them. Recently a research team I'm on offered an invitation - they were allowed to invite two patient partners. Maybe being on SPOR funded research projects and networks is the way to get there.

Good luck for the next time.

Annette

[Kathy Smith]

Although I have been a patient research reviewer for SPOR and participated in the Ontario SPOR Patients in Research Workshop in Toronto last spring, I did not get invited to this SPOR Summit. Wish I could have attended and able to network with so many other PFAs. I’m new to PAN but glad to have joined.

[Kathy Smith]

Thanks Annette. Will look into the “how to’s” deeper. I thought they had me on their list. Guess not. I spoke at the recent Canadian Health Workforce Conference sponsored by CIHI. But SPOR paid for the PFAs. Some other time I hope. I love doing research reviews.

[Laurel Radley]

Hello Annette and All

Another idea... Touching base at the reception would allow us to recognize each other and meet for the networking lunch the next day.

Laurel

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[Annette McKinnon]

We can try that.

For everyone interested I will be manning the booth for the Evidence Alliance from 4:30 to 5:30 on the night of the reception (Tuesday), so am easy to find for that period. I'll try to research the spaces in the hotel for dinner or a meet up on Wednesday.

I doubt I'll really have energy for the Ottawa night life that evening.

Annette

[Candace Skrapek]

It will be great to connect. See you in Ottawa...

Candace

[Annette McKinnon]

The registration desk is always easy to find. What if we all meet there on Wednesday after the keynote, which I see as 4:15? Then no one has to go out of their way to find each other and we can at least check in with one another.

Some of us may want to have dinner together, some not but I'd love to meet you all.

I don't know how large a group of people the SPOR Summit includes.

Candace, do you know Janet Gunderson? She's a very involved SK patient who is a member too. We sit on some of the same patent groups.

Annette

[Laurel Radley]

Hi Annette The registration desk at 4:15 Wednesday sounds great. Will look for you and anyone else who would luke tio joinus. Will also look for those of you with posters

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[Laurel Radley]

Hi Annette and All

The registration desk at 4:15 Wednesday sounds great. Will look for you and anyone else who would Iike to meet. Will also look for those of you with posters to at least touch base.

Sent via Groupsite Mobile.

[Annette McKinnon]

In case you wondered how this meet up went at the SPOR Summit, here's the answer.

We had 20 patient advisors get together and meet briefly after the final speaker of day 2. We exchanged cards and greetings, and then split up, with 10 of us having dinner together in the conference hotel.

I thought it might be pushy to ask CIHR to tell PAN members only about the meet up so I asked them to invite all the patients. Then I told most of them about PAN, so it worked well. Maybe next time they have a SPOR Summit they will think about making patient networking easier for us. It was great that they agreed to do it.

Annette