Ontario Hospital Association - a struggle

[A Former User]

First the good news. PFAC members are considered members of OHA

It was a 3 answer process

Dear Annette

You are absolutely correct in that PFACs are an integral part of each of our member hospitals and we certainly do recognize and appreciate the importance of patients in the health care and hospital system. We currently offer all PFAC members who are attached to public hospitals in Ontario the special OHA member rate for HealthAchieve registration. When registering online, you would simply select the affiliated hospital from the drop down list to receive the discounted rate.

In addition, if the hospital is a member of the OHA's Benefit Plan, then registration for HealthAchieve would be free (until September 15). To find out if the affiliated hospital is an OHA Benefit Plan member, take a look at the list HERE

If you have any questions or would like further information about the registration rates, please do not hesitate to contact me.

Jennifer Hall, HealthAchieve, Customer Engagement

Below are the letters it took to get to this

Hi Jennifer

Thanks for your response.

PFACs (Patient and Family Advisory Committees) are required in every hospital in Ontario. The Minister of Health has launched the Patients First Act, and Patients are now able to take courses in patient safety offered by CPSI.

I think these events are strong indicators of the importance of patients to the healthcare and hospital system, and believe it is important to include patients and family, even if only to a limited extent.

The cost are too high for all but the most wealthy patients to attend, and of course hospitals are run with taxpayer money, meaning that to the extent required, we the taxpayers are funding much of Health Achieve through hospital staff registrations.

I feel this is unfair and hope that the OHA will reconsider.

Regards, Annette

> Thank you for your inquiry.

> HealthAchieve registration rates are based on OHA member and non-member categories as well as students as you mentioned. Unfortunately, we do not offer patient and family rates, this would fall under 'non-member'.

> Below is the link to our rate information:

> http://www.healthachieve.com/register/Pages/Registration-Fees.aspx

> If you have any questions, please let me know.

Jennifer

> Hello

> I'm wondering about registration fees for PFAC members, or for patients and family who have an interest in attending.

> I see students pay $40, but there is no mention of patients.

> Regards

> Annette

[A Former User]

Does HealthAchieve have any desire to be a #PatientsIncluded conference?

[A Former User]

Well, that's disappointing. *sigh*

[A Former User]

"I'd be pretty surprised if they wanted to do that. It sounds like a trade show I think with lots of exhibitors who want to sell or influence hospitals -

"the preeminent gathering place for health care and business leaders."

Jennifer sounds like she spoke to someone else, or as if PFAC is a magic word.

They have a remote version of the conference in Thunder Bay, that is also expensive (to a patient)

[A Former User]

Appreciate the comments/share that "we" PFA's, as a result of our engagement experiences are sharing lessons we are learning. At the outset of my focus on patient engagement initiatives/experiences I had certain perspectives, and assumptions...

1 That the projects in which I had in-depth experience with & was eager to partner in, had "engagement project leaders & health care team members" who either possessed or, had been educated/trained/supplied with the needed/must have competencies i.e. knowledge/skills/attitudes to be able to collaborate & achieve the objectives/outcomes of their research projects

2. That there were clear, standardized, consistent, coordinated and integrated approaches in "how to" engage PFAC's across engagement initiatives/projects.

The reality - OOPs, my assumptions were dispelled, expectations, just somewhat met. This dampened my enthusiasm, lessened my interest in participating. I did not feel a valued, equal, partner or, that my experiences as a patient were taken in to consideration. I felt this way because the communications I received - written, verbal were unclear, incomplete, hard to comprehend, took much time and even then, despite time and effort invested, I was left with lots of questions about what was expected of me, how I could contribute, other than to just read, listen to what was being said and be satisfied/contented that I had even been invited to sit at the table. I was not feeling the partnership, collaborative attitude, or, willingness to change for the benefit of equal partnership nor, satisfied with some of my experiences.

I pushed the "pause" button, and now am much more discerning about participating, regardless of how important I feel the initiative is. I decided to ask (appreciative inquiry) so many more questions about the opportunity(s), what exactly is it, why and by whom it was determined a priority, how the group is organized, the background of participants (clinician, MD, etc.. their roles), why patient participation in this initiative is valued/matters, how patient involvement will benefit the initiative, what specifically is expected of me, how fully, or limited my involvement will be, how much preparation is required, (approximate amount of my time, frequency, the engagement location(s), how much notice I'll receive about meeting dates, when I can anticipate receiving any materials required in order to prepare for my participation for meetings, who will be facilitating meetings (project lead or others), how I will get to know other participants, prior to getting down to work, our process/guidelines for working together, what will happen to the outcomes we arrive at - who will they be sent to, what will the role of the next groups be, criteria that will determine the use, implementation of outcomes/results, if the initiative outcomes, results do/do not not meet criteria set by the other groups in the evaluation process, will we be advised as to why/why not, will we be allowed to re-work it. These reflect my criteria to feel comfortable and motivated to contribute my intellectual capital & time to any engagement initiative and/or opportunity, especially in a project that will be of a long duration.

Now, like Claude, if my criteria are not met, I decline. And like Claude, others have mentioned, I provide constructive feedback as to why I decline. Feedback is particularly important if requested to participate in a one-off experience, event. No one can treat us lightly without "our" permission. Sometimes, we learn this the hard way -experiences. The importance is to learn the lessons and adapt our behaviours, responses so others can learn too.

OUR PFA experiences with the barriers, obstacles, gaps in the health system are key components to improving our health system and OUR time is valuable too. What I look for now, are "partners" who get it, who know that the competencies - certain skills, knowledge, are required and who are "willing" to work collaboratively with PFA's in developing and growing proficient in them.

Thank you for your perspectives.... Best, Denyse

[A Former User]

I was asked to speak at a HealthAchieve conference a couple of years ago. My host host hospital paid for the travel so of I go to Toronto first thing in the morning and by the time the CEOs were done, I got a whole minute to share, so here's what I said " I can't tell you a lifetime of experience in a minute so if you're interested, please come speak with me, I'll be here all day" and sat down.

I received a standing ovation for my statement yet only one delegate came to me, I happily shared my story and went on with my day. As previously mentioned, I discovered that most if not all of the displays were companies selling their product and this was a great disappointment but I saw the opportunity to get the OHA on board with PE and still working on it. It's a hard struggle.

I've been asked to share at another two HealthAchieve conferences and respectfully declined because of their position on Patient and Family Engagement, my time is too valuable to waste on deaf ears but I have shared my views with them.

[A Former User]

Hi all,

This is a great discussion! Thanks very much.

I think Claude and Denyse have spelled out an excellent approach: take time to prepare a criteria that reflects your standards for respectful and productive partnership. And then apply it every time. When the criteria is met, your can look forward to a productive and satisfying contribution. When it's not met, you can decline with feedback on why --so essential to helping the system change.

The most serious challenge I see is that developing a personal criteria almost certainly takes time and energy as trial-and-error. Because this is healthcare, poor partnerships may be hurtful, discouraging and even traumatic. Yes, I've been there. But we certainly do learn!

Do you think it would be useful to open up this as a new Discussion Topic? Here among PAN members, each of us might document our criteria for accepting an engagement. Hearing from others might embolden some of us. No doubt we would bring up facets many of us haven't yet encountered. We can surely learn from each other!

Claude, Denyse, any interest in offering your criteria in a standard format concise bulleted list? Could this turn into a checklist for each of us to adapt, or even become a document for best practice in partnering?

Hmmm. What do you think? Or maybe someone's already done this?

Cheers,
Carolyn

[A Former User]

Thanks for your suggestion Carolyn, I like this as a PAN "collective" development effort. A checklist will enable us to "thoughtfully" engage in an assignment, be motivated by it and enable us to have a more personal rewarding experience as well as a sense of contributing to health care improvements Canada-wide. YAY!

Upon reflection, my own experiences indicate that perhaps the project leads & their health care team members need more assistance from us. They need to know our needs/requirements in order to partner equally & successfully and we are the ones who must provide them.

Carolyn, I'll kick off your suggestion by sharing my checklist (which always continues to evolve) by suggesting a first checklist heading, i.e. :

KNOW YOURSELF:

-To what extent is the subject matter of interest to me?

-Approximately how much time can I comfortably invest in the assignment term & with what frequency?

-Do I have the ability, tools, resources to participate as fully as I would like? (ease of mobility, access to transportation, computer, teleconferencing capability, ETC...

-Are being reimbursed for travel & expenses & is compensation for my expertise required (depending on amount of time & work involved) important to me?

ETC.......

This is by no means a complete "know yourself" checklist, so please add/modify it, and/or provide the next checklist heading, e.g. What you need to know about the assignment before accepting to participate or, .............other heading.

Looking forward to seeing our checklist grow, evolve.

Thanks & best - Denyse