Standards Technical Committee

Thanks, Amy, for the update. I was going to say the exact same thing as Annette -- if you don't have a job, but are on disability, you don't get paid? How do we convince them of the importance of offering an honorarium or something for patients??

Ok ~ I finally did it. I wrote a note expressing my concerns about the amount of time being asked of patients and honorarium. Will see where this goes.

Is there any news about HSO/Accreditation Canada's efforts to recruit patients/caregivers to various positions?

Does anyone know if these are still open?

Is there any resolution on the compensation issue? Alies

That's very sad. They make the effort to offer a hand and ask for help, and then what happens when you take the trouble to respond? Nothing.

Before I begin, I would like to say that I cherish my volunteer time; it is a very important aspect of my personal recovery and the decision to volunteer or ask for compensation is based on my own wellbeing. I am on a fixed income so there are limitations as to how much I can receive over the year but it doesn't stop me from accepting remuneration when it is offered.

Remuneration for time has always been a sore point with me although I have made some ground on getting compensation but I can't say that it's a living wage. The biggest barrier I come across is that the gov't and/or health care organization claim they do not have any policies on remuneration hence they cannot justify the compensation. With gov't oversight and limitations on this type of fiscal activity, it makes it very difficult for funds to be released to compensate us for our time and expertise, but I have made some progress. I have to give kudos to some who do recognize that some form of compensation is fair but to be honest, when I receive a $10 Tim Horton's gift card for a full 8 hour day, I get a little insulted. At times, it's better to get nothing than to get such a token "gift", but the intent there, it's the resources and policies that are lacking.

I always have to remind myself that this is new to many organizations (particularly those affected by the Patients First Act) and most are not prepared for this but many are learning and making adjustments to accommodate this need. We need to set a standard of payment though. I take the opportunity bring up compensation whenever it's appropriate (which is most of the time) and everyone agrees but little is being done. So what do we do?

These are my guidelines for accepting compensation for work. They aren't written is stone but work pretty well for me

If the organization pays for "expert guest speakers/lecturers" at an event, it is only fair that I be paid as well. My fees range from $250.00 for an hour presentation to $450.00 for a full day event. I have pretty good success with this. I consider myself a contractor for these types of events and expect to be paid in the same manner as any other speaker/lecturer.
Before I accept an offer to speak, I always ask about compensation and it usually begins a conversation of when and how much. If I find the recipient is open, I usually do the event as a volunteer but charge should I be asked to participate once again.
I've been fortunate enough to be in at the start of many committees and councils and this gives me the benefit of knowing what funding comes with the group. Compensation is not usually a line item but after the initial meeting, the organizers usually look for funds to compensate. My only point is that it be more than minimum wage (currently at $11.25/hr). This gives them an idea of how to much to increase their budget.
When remuneration is offered, I ensure that it be paid in a timely manner. For many, this is a new process and patience is needed for them to work out the logistics. I usually get compensated on the day of the event (if enough notice is given). I have recently waited for 3 months for the UHN to compensate me and this was very annoying because I know this is not new to them and a process is in place and yet, I had many hurdles to go over. This is the second time I have had to wait for them and have advised them I will no longer participate unless there is a guarantee of payment within 30 days.
When I advocate for remuneration, I insist that all patients and family members receive the same considerations else I do not accept the payment (and more often than not, the assignment). We are all in this together and it wouldn't be fair if I get payed, yet my colleagues do not.
When being compensated for work on a committee or working group, I always charge for my time to prepare for the meeting (reading documents, reports etc..) usually a half hour for every hour of the meeting (ex: 2 hour meeting would be 3 hours of hourly rate)
The hourly rate fluctuates depending on the size and scope of the agency and funders. I do a lot of work with small community groups and organizations (who have little money as it is) so my rate would change to ensure that I be able to participate rather than not having any patient or family member at the table at all. (The range is from $15/hr to $50/hr)

I hope these experiences help the conversation, we still have a long way to go though.

When I wrote about my concerns about this committee, I never received a reply back. I had also applied to be on their 'Expert patient faculty' and have not received any update recently regarding this. Thus far, I am not impressed with the lack of communication.

Thanks for all of the advice Claude. I was just part way through an email refusing an invitation to speak at a conference. It's far, inconvenient plus a lot of work to prepare a talk for no $$ at a for-profit conference.

I mentioned a few conversations back that I receive a per diem of $150 from the Government of Ontario as a lay member of the Council of a Regulated Health Professionals College.

The professional members receive $320 per day and receive $45 per hour for prep time. I am on an advisory board for another college and they feel it is fair to pay the patients at the same rate as the professionals. We are pleased to see that.

One way to ensure that in some way people who chose or are forced not to accept compensation are included, is to suggest a sum be donated to the charity or patient group of the patient's choice.

Wow, Claude! Thanks for sharing all of this. Sounds like you've really thought this through & have come up with a system that works for you.

Julie, I agree that if they value the expertise they should be paying. I do find that some of my more in depth and meaningful experiences take a relatively big time commitment. That is a problem for anyone who is working so how should we handle this?

With regard to HSO, I agree with your assessment that they are trying to do it right and should be supported.

We still have a long way to go to sort out the approaches to compensation for various activities so it is good to have this conversation. Thanks for jumping in. Alies

Agree with all the comments I've read and have been learning from the "school" of hard knocks, on-the-job! If we are asked to contribute our expertise, we should be paid. How else will policy makers, researchers etc.."learn" what they need to "know" in order to make improvements? Like the great comments here, I too, carefully evaluate the "project/assignment requests" I receive.

But I've been working for free in the health system for a long time. An "unpaid" caregiver in the health system for 14 years, I left my dearly loved career to care for my dearly loved dad, because of the dysfunction in the health system. I advocated for a senior (my dad) in many, many, many elements of the system and made sure he received the best possible treatments, from medical/health professionals. These were the "task/medical procedures I was not competent or, sufficiently knowledgeable to perform. However, I subsidized all the while the health system's health providers' deficiencies by providing/meeting the human dimension of care standards for patients - filling in the gaps in information, searching for options, working through, around the barriers, navigating the silos, searching for ideas, working in collaboration to problem solve, being the coordinator & integrator of dad's care. I was an extra employee, supplementing the number of staff available except, received no pay.

I had more than sufficient time to observe staff performance - especially providers abilities/inabilities to "demonstrate" respect/dignity, which "is observable", in both body language and communication skills (words, tone of voice, volume) as they carried out their medical, health related tasks. There were some "great" individuals. But, like patients, caregivers they too faced the gaps, barriers, silos, not of their creation, and like patients, caregivers, powerless to change.

While improving the processes, procedures, systems, policies, the health system must address their deficits in the "human dimension standards" of caregiving - those abilities called the "soft skills". These are EQUALLY important as the medical tasks of health care.

Those "initiating, leading" the improvements in health care, would not NEED patients and caregivers if they fully comprehended these TWO major intertwined elements of providing health care - the task & human skills, abilities, knowledge, attitude. If they had all this knowledge, understanding, our health system would be improved by now.

Through the projects we engage in (unless, we are independently wealthy) should of course, be compensated, "if" it is "valued" by the health system.

Hi all,

Jumping in for the first time into a conversation. I wanted to weigh in about the work/activities of HSO.

I applied for the Patient Expert role. It is a paid position, part time and on contract. I was not the successful candidate, but learned a lot about HSO and their focus/mandate when it comes to patient experts. I believe they are legitimate in wanting to build an organization that included patient expertise. In my experience, this is still rare to find. I do find that they still don't understand the monetary value of engaging this type of expertise, and that is reflected in the expectation of 'volunteer experts' to their technical committees.

I have also applied to 2 of their technical committees (a few months ago) and have recently heard back. They have a 2 stage interview process, and the positions are unpaid, required a time commitment that is significant (in my opinion). I have recently been contacted about an interview for both committees I applied for, and will need to take time from work to attend.
I am trying to determine if these committees and HSO are where I want to spend my precious time when it comes to addressing my interest in providing the patient/family perspective.

HSO seems to be taking a new approach to accreditation. It looks like the right path, and I feel there are good opportunities for patient/families. I question the monetary compensation to 'experts' they are looking to engage. If you feel the expertise is important to be had, then why not pay for it?

Julie

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Standards Technical Committee

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