Due date is Nov 27 2020

I have been working with Ambreen to explore ways to engage people from diverse backgrounds to help co-create a community interested in improving healthcare and health equity. We are in the early stages but hope to move this along in spite of COVID over the next year. This will be the first of probably 3 webinars in total.

Hope you have a listen. Cheers! Alies

Thank you to both of you for your kind words and good luck to Toby. Richard

Excellent Resource, Thank you for sharing it.

Hi Kathy
here is the link
http://www.stmichaelshospital.com/media/detail.php?source=hospital_news/2020/0714

Hi, I am a family member, Power of Attorney to my brother who lives in Long Term Care (LTC) and I am also provide him with emotional and spiritual support. I can not support your definitions as you have defined them. I would recommend that you not separate physical needs from mental and social needs. They are all a apart of a person`s well-being. Let`s support transforming LTC not worrying about definitions.

That issue you mention Alies, where the doctors are independent contractors to hospitals also created holes in our digital records.
The hospitals have portals, so we get some info from them, but not the doctors we see there, because they don't have to do it.

Annette

Thanks Alies. And thanks for all your good work with this data ownership issue. These points are very important. We need policies and guidelines for ownership and prote of privacy of patient health record information including lab/test results from government and private companies. I doubt many American patients have given ownership of their data much thought when they sign those private lab test requisition forms that state the company owns the database. Patients do have access to their results through their EMRs. And they get those results in record time. Patients can also requisition (and pay) for tests directly. Unfortunately, though, each state selected their own electronic medical record system and the providers are not compatible with neighbouring states. At least their private lab results are in a national company data base system. I hope Canada sets up one universal EMR system for Canadians.

Sent from my iPhone

At a recent meeting we had a conversation about people joining 2 meetings at once or/ and doing other task. I wouldn't want to be spending my valuable time presenting or hosting a meeting while someone is mult- tasking, how much can they absorb in these cases. Just saying! and I know I have been guilty but will rethink this.

I know this is happening because we all now have many meetings happening.

Hi Claudia,

I have a few suggestions that also are posted elsewhere on Groupsite.

Among CFHI's Spotlight Series webinars are:

April 20: Family and Caregiver Presence and Partnership during the COVID-19 Pandemic

July 14: #MoreThanAVisitor – Reintegration of Family Caregivers as Essential Partners in Care

The recordings are posted shortly after the live event. Perhaps you were able to join this second webinar today? The panel discussed a new report proposing serious reform here.

Also CanCOVID is an expert network of Canadian COVID-19 researchers, clinical collaborators, and healthcare stakeholders from across the country. This would be an ideal forum for posing your question. There may already be much to learn from discussions that have already taken place. This site includes many people from the public health community who are planning for just the crisis you describe.

Maybe other PAN members are involved locally and might post their experiences here?

Best wishes and stay safe!
Cheers, Carolyn

I cannot emphasize how critical family caregivers are during this time.

Luci

I applied to Health Data Research Network Canada.

This group won the CIHR competition to put together a health data consolidated approach for health researchers in Canada. The hope is to remove the jurisdictional barriers that require a contract for data with each province/territory. This effort is to provide a sole point of access for researchers saving time and money. It could be more than that with greater vision. We are needed to supply that vision.

PAN was on a competing bid that lost to this group but we, as patient partners, really should be involved as individuals at least.

Decisions about priorities, standards, privacy and consent will most likely be part of this exercise. It does help if you are somewhat knowledgeable about data, databases and are not tech averse. Having said that, it still should not stop you from being involved.

Warning, the application is lengthy and detailed with mostly text boxes.

Alies

As usual following one link leads to others. After going to the link
at the end of your email I found this one of particular interest: https://pubmed.ncbi.nlm.nih.gov/29152330/

I did the July 3 one. Well paced and clear. Appreciated learning about the decision tools.

Oh my, this is timely! I am experiencing more and more loss. Yesterday one of my cousins lost her son in a tragic accident out West. Another couple of cousins are battling COVID, job loss and dealing with an infant and an uncertain future.

We have all lost the security of being able to anticipate the future with any certainty, the loss of the hugs and touch of some of our nearest and dearest, the feeling that our children can thrive in the future. We all need to understand and learn how to manage this and maintain our humanity and sanity. I certainly do.

Hi Alies I would be interested as well, please send me the cover letter too.

Thank you

Thanks Alies I attending this series today. I was happy to see a patient representative and it was informed. Thats all to it .