PAN Newsletter

[JoAnne Mosel]

We know your time is precious and that information and connection are critical to empowerment. PAN is excited to announce we are creating a newsletter - about you and for you. It will be comprised of three sections - 1) Hot topics 2)Interviews and 3) What's New?. Examples of Hot Topics are barriers, research of interest, etc. Interviews with POR champions will provide inspiration and help to promote a patient engagement culture.In our What's New section, the Steering Committee will apprise us of the important and impactful activities in which PAN is involved. To begin, we invite you to share your story of one or more barriers to patient engagement that you've experienced. 1. What was the barrier?2.Was it resolved and if so, how did you resolve it? 3. If not, what recommendations would you make to facilitate resolution? We encourage you to post here on the site to spark discussion.We will synthesize the information into a working document that will be helpful to current and, especially, future members of PAN. If you prefer, your story can be emailed to hello@patientadvisors.ca. We also welcome your thoughts and ideas for other relevant content. The newsletter is expected to be launched in mid-August 2018.We hope to hear from you soon!

JoAnne Mosel

Editor

[Laurie Proulx]

A barrier I recently experienced while doing research funding grant reviews was the inability to schedule around my work commitments. I can’t be expected to take a vacation day to participate in a full day conference call and they would not schedule my grants together. Very disappointing since I took a lot of time to review 6 grant applications which were 80+ pages in length EACH.

I do the newsletter for CAPA if you need any help.

Sent via Groupsite Mobile.

[Samira Chandani]

On one of my projects - one barrier I faced was not being able to voice my concerns, feedback about the project. The lead researcher had a strong personality and could hold a grudge against you if we did not agree with her. This created a very toxic environment. Talking to the lead researcher to try see resolve the issue could have meant being thrown off the team. Since I was eager to learn new skills and had my mentor on the team too, I let the attitude not bother me and continued to work hard, learn and go to my mentor if I had questions. After the project ended, the lead researcher approached me several time for other projects. I did not accept any paid positions with the researcher - only voluntary positions. By this time this researcher had a lot more respect for me, my ideas etc and was less volatile...perhaps she realized I would not accept to work on the team as a patient

[Alies Maybee]

My biggest barrier is scheduling. I have to re-assess what I am involved in and prioritize what is important to me and where I have the most impact.

Over time, as people got to know me, they would invite me for all sorts of things whether I was suited or not. In the beginning I said yes to everything and drove myself crazy trying to keep up. I think in part, the people asking go with who they know and are not making the effort to reach new people or think through what type of person, experience, skills they need for their work.

I need to be careful of burnout and I suspect there are many of us in the same boat. We are thrilled to be involved but then it becomes too much. It is a tricky balancing act.

[JoAnne Mosel]

One barrier I've encountered is when I get the feeling the door is closed;gate is locked. I've sent emails or made phone calls, none of which is returned. It is rude and dismissive. The same people who invite citizens to engage leave my attempts to engage hanging in an Inbox somewhere. Researchers complain about their time constraints. I, as well, have taken my time to formulate questions, develop solutions and initiate discussion. Perhaps I've not reached the right contact person, but an institution has a directory and could at the least reply to me briefly with referrals. How about a protocol of common courtesy?

[JoAnne Mosel]

Another barrier i've encountered is when I am put into a position where I have to volunteer more than was my intention. This will stem from an idea I propose , that was perhaps learned from someone else or that I learned from another project. Because the Team on the current project has no clue what I'm talking about, they give the job to me to go get more information and basically teach them. Hey, sorry, if you want to partner, go get training, just like I did. Don't expect me, as a volunteer, to define everyone's roles and responsibilities so that the only job you have to do is tick a few boxes. Maybe I'm being blunt here but as Alies noted above, it can become too much. BTW, there was a study about Women and Volunteering. Women are expected to volunteer more than men. They will do so more often in a mixed-gender group. Interesting.

[Nancy Roper]

A barrier we have found recently is the timeliness and bureaucracy of expense payments in one of our groups. (Thankfully my other groups are great)

We are a group that volunteers periodically throughout the year in groups of 2 with 1 doctor at 2 different locations (and occasionally at 2-3 other locations). There are 10 of us in the group so everyone has known everyone else for years so there should be no trust issues and it should be easy to remember if the volunteer was at the session or not. In June and at yearend they ask us to submit our expenses. We're talking about $25 to $150 each time in most cases - not a huge amount of money for the person paying, seeing as we get a corporate grant each year from my company to cover our expenses.

Unfortunately, the new folks in charge have been horrific, demanding that we include a mapquest of each trip to prove the mileage we are claiming and a signature from the person we are volunteering with to prove that we were there at each volunteer date. Receipts for parking or transit rides are mandatory - no receipt, no payment. This has made doing our expenses a bunch more work (Mapquest is really hard to use ... but I've saved my maps now and reuse them each time!)

To add insult to injury, the doctors in charge had a big fight about who would sign the expenses, and when they finally decided, it took 6 weeks for the doctor to sign 3 single-page expense forms. Now we wait for our money ... last time it took 5 months.

We've reminded them that people in the group are on disability and some have to use the foodbank to get through the month, but it hasn't helped to speed things up. We also reminded them that folks on disability don't have space on their credit cards to carry the larger expenses (eg year end party) on their cards for 5 months.

We've considered disbanding the group due to the disrespect shown over this and other issues. What a shame to retract the volunteer services from the folks who are benefitting from them, however.

Sad. .....N

[JoAnne Mosel]

Nancy,

I am disgusted to hear what you wrote. I am a CPA/CA (chartered accountant) by training and have worked in a National firm in which our clients had large accounting systems. Due to the irregularities that occurred in the past 40 years or so, internal controls have been implemented that are so tight as to have become obstacles to those they hurt the most. I'm not sure if changing the systems is possible but there is place , for sure, for remediating these problems. It's not the first time I've heard a similar story and I've dealt with it to a certain extent myself. I was roaring mad because I understand the stupidity of it all. We need to advocate for special practices for volunteers. I can work on it with others's help.

JoAnne

[Virginia McIntyre]

Hello,

I also find scheduling one of the biggest barriers. I work part time but I get the impression the HCP'c on the committees feel all the patient advisors do not work and therefore have little consideration of my time. To resolve this I suggest that meetings be scheduled at least 8 weeks ahead and do not change it at the last minute. I use vacation time and they are all getting paid. I am off most Wednesdays and letting the committee lead know this helps but still constant meeting changes.

The other barrier I have is that expenses are not covered. I asked to join committees regarding chronic pain this is important to me) so don't feel I can ask for expenses covered. Also, I am speaking at a conference in the fall and no one has asked me about expenses, it is 1.5 hours away but we are making sure the patients who receive the scholarships are fully covered and I am traveling the longest distance (1.5 hour).

I also sit on an National committee and when we meet flight and hotel are paid but never offer to pay mileage to airport or parking. When it was brought up at a meeting, I hear from some that you can apply but I don't or I give money back to organization. Never is an expense claim given, must ask. Not sure how to resolve this, I should not have to ask.

Twice I been given a expense form and not had to ask. These were at recent primary heath care research events.

Virginia

Virginia

[JoAnne Mosel]

Virginia,

Great post! i too find HCP/others very inconsiderate of my time! This shows up in all sorts of ways - ex. are sending links that require large amounts of time to navigate to find what you need, asking for paperwork to be filled out with information that is useless, etc.

So annoying about the expense form. I received a scholarship to my first conference last year. Covered was flight, hotel and conference fees. Being an accountant who is always chasing other people for paperwork, I asked for an expense report months before the event. I needed to know what to keep, when to file, what was covered, all in advance. (I shared the link with a researcher in the taxi from the airport as she had forgotten all about it). Perusing the rules and regulations for an hour led me to the conclusion baggage fees were not covered. This would be $75. A carry-on would not do for 4 days. I emailed the contact person and was told baggage was not covered. I emailed someone else and told same thing. Then I wrote a letter explaining that in the past fare would have covered the bags (remember the days?). Now, fares are cheaper but bags are an add-on and it would cost me to attend, an out-of-pocket expense for something I was receiving no revenue from. Then they agreed to pay for the bags. I'd suggest that PROTOCOL be such that as soon as one receives confirmation of a subsidy, an expense report automatically be sent to each recipient of the scholarship. Simple to do and saves much aggravation. Scientists tend not to work in a business-like fashion.

[Alies Maybee]

JoAnne, I like you suggestions about sending the expense form right away. This whole expenses thing can be a nightmare. I get a different form for each engagement and have to navigate a new system each time with different rules.

I think the delay in payment is a huge issue, especially for those on support. I also resent having to "loan" an organization money and pay interest on it on my credit card. I mean really?! And they expect us often to work for free.

One expense I incur than no one covers is the cost of printing docs so I can read them. I go through quite a bit of paper not to mention printer ink.

And in cities where we have a transit card, they skip giving out tokens and expect I'll pay the transit because I have a cared and it is too difficult to figure out how to reimburse me. Heard of cash anyone???

Good discussion. Alies

[Carolyn Canfield]

Here's a refresh on this topic to make sure everyone has seen our newsletter CONNEX!
Congratulations to JoAnne and her team's hard work to get this inaugural issue launched.

PAN CONNEX - Fall 2018 Eng and Fr .pdf

Please take a look and post your comments, suggestions --and interest in getting involved.

I think the graphics are great, and I love the photo of PAN member Kathy from Thunder Bay and Tricia from Helsinki, Finland, at the Canadian Health Workforce Conference this fall in Ottawa-Gatineau. After all, isn't it patients and family caregivers who do THE MAJORITY of healthcare labour in Canada?

Hey, consider if you'd like to join the PAN communications team! Maybe you've got writing and editing skills to share, or would like to contribute a column or cartoon? Let's work together to make this newsletter a vibrant link for connecting up our brilliant PAN members across this incredible country. THANKS!!

Best wishes to all, Carolyn

P.S. Some people didn't receive the launch email for CONNEX in October. Is that you?? Let us know so we can investigate where the gremlins lie in hiding. Thanks for your help.