Patient involvement in health care service design

[A Former User]

Hi all,

I’m new to the group but have been involved as a patient advisor in a lot of different ways, such drug review processes, drug funding decisions, research, industry, etc. I would really like to get involved in health care service design somehow but I’m having a hard time finding patient engagement opportunities in hospitals and community care settings. What might be a good way to delve into this topic? It’s personally just a topic I feel very strongly about as a person who has lived with Juvenile Idiopathic Arthritis (JIA) for 26 years, both in a pediatric and adult care setting. I just feel like I would have a lot to say about it and have a ton of ideas J

Thanks for any and all assistance.

Laurie

[A Former User]

Thanks Laurie. Welcome to the group !!!!

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[A Former User]

There is actually an opportunity that Alies posted on the groupsite where Anna Gagliardi is looking for patients to help with "How best to angage patients in hospital service planning and improvement"

It's a proposal at this point

Annette

[A Former User]

Welcome Laurie

I am fairly new with the group too and felt the same as you. This group is a good start they have provided me with feedback and suggestions.

My focus is to get involved with the hospitals and community care also. This isn't easy for the need to want a patient advisor. I am seeing the health care system starting to embrace the patient advisor. One thing I did was offer my self as a patient advisor to a conference committee that did not have one. I have myofascia pain symptom so my focus is towards the pain community.

I volunteer with osteoporosis Canada too with their patient arm. I wonder if JIA society has volunteer opportunities?

Also I am on twitter and NS posted on twitter looking for a patient advisor on a committee. I applied and now sit with them. Social media can help.

Look on your provincial health care website.

Good luck

I do find this a challenge too

Virginia

I would really like to get involved in health care service design somehow but I’m having a hard time finding patient engagement opportunities in hospitals and community care settings

[A Former User]

Thanks for all of the ideas, folks. I'll see what else I can find from a provincial / ON point of view. I also saw the Accreditation Canada opportunity which was super interesting to me (I applied by the way). but have no found anything locally in the Ottawa hospital.

[A Former User]

Laurie,

Welcome to PAN! We hope you will enjoy learning and sharing with us!

The Arthritis Society formed a Childhood Arthritis Advisory Council back in 2013. You may want to inquire if the Arthritis Society is thinking of or already has an advisory council that adults can join.

[A Former User]

Hi again Laurie

I have been pondering this more. Going to Accreditation Canada was a good idea. Also the Health Standards Organization have working groups that you could apply to. As well go to your local hospital and see if they have An advisory committee that you can join or even suggest they start one. If the need help they can connect with my home base here for help. We have 20 advisory committees running. From critical care to aboriginal to palliative care

Let me know if we can help. We offer every new advisor a three hour orientation to help them understand their new role. This orientation we created has since been adopted by our provinces Health Quality Councils so advisors provincial speak and act as one in the understanding and practice of patient and family centred care.

Hope this help

Heather

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[A Former User]

Thanks Amy and Heather. I was thinking of approaching my local hospital to see if they have an advisory board or committee. I did try to look this up but couldn't find anything except the Children's Hospital does.

Heather, what organization do you work with that provides this orientation? Is it PAN?

[A Former User]

Hi There

I am in Saskatoon. I have been advising here for seven years. I was cool before it was cool to be pfcc. Lol.

I work closely with the region and we noticed about two years ago that our advisors are not understanding their roles as advisors. So we created a three hour session for all new advisors and once a month we do this. It's me and someone from our region. We give history of pfcc and why it's important. How they use their stories to help better work with providers. We talk about the difference between advisors, advocates and volunteers. It's an excellent way to hep our advisors start. So everyone is speaking the same language

I think we at pan could offer something similar. I will see what the steering committee thinks and perhaps we can start something for our advisors. So they are confident in their roles.

I am happy to talk further. Feel free to connect with me via email.

Take care

Heather

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[A Former User]

HI Heather

I would be very interested in the 3 hour session. Do you have access via webinar or archive sessions? I think this is a great initiative.

Virginia