Are PFACs mostly for PR or do they actually make change?

[Alies Maybee]

Ted Ball, long time involvement at the highest level of healthcare policy in Ontario has a provocative blog on LinkedIn. His latest post talks about Patient and Family Councils (PFACs), especially for government, as being almost only for PR purposes.

What do you think? Have you experienced noticeable changes because of your PFACs?

Ted's Post:
60 percent of people selected by healthcrats and healthcare providers as PATIENT ADVOCATES are in fact chosen because they won’t advocate for changes to the status quo.‍️‍️

Only 40 percent of so-called “PATIENT ADVOCATES” selected by healthcare providers actually seek PATIENT EMPOWERMENT /PATIENT INVOLVEMENT in their care — and in PATIENT EXPERIENCE CO-DESIGN to improve the patient’s experience.

But most PATIENT ADVISORY COUNCILS in Ontario are created for PR purposes—not for the fundamental redesign of the existing PROVIDER-CENTRIC SYSTEM DESIGNS to PATIENT-CENTRIC SYSTEM DESIGNS.‍️

“Busywork”, yes, but doing nothing to actually redesign the existing fragmented systems, structures and work processes designed by the various silos at Queen’s Park — where “integration” is preached, not practiced at the top is the Command & Control Structures for micromanaging the system.

So we have a healthcare system that focuses their efforts on marketing the “optics” of PATIENT INVOLVEMENT.

So the emphasis is on spin-doctored communications that frame these efforts as “intended” to lead to reforms (I.e. connected/ patient-centred/ seamless across the continuum of care in each OHT), when in fact, all the leveraged actions are designed to entrench the STATUS QUO of PATIENT NON-INVOLVEMENT.

Their goal is to create optical illusion that these “PATIENT ADVISORY COUNCILS” will somehow cause improvements for patients.

Nevertheless, there is no data demonstrating that these PR STRUCTURES have had any MEANINGFUL IMPACT on shifting the existing PROVIDER-CENTRIC SYSTEM

[Chris Johnston]

@Alies-Maybee I think to some extent there is an element of 'it depends' but for the most part in my experience this rings true.

It doesn't help that there's a lot of overlapping terminology - PFAC/PAC, sometimes Community Advisory Councils, all can be referred to as Groups rather than Councils etc.

I've been involved in several - one got reduced to a mailing list when members expressed dissatisfaction with their role and impact, one got 'refreshed' with vocal members being dropped to 'make space for newcomers', one got dissolved but persists in meeting as a network despite being stripped of support and actively discouraged.

I joined one that was active, thriving and seemed respected - then the parent organization got subsumed in a government merger, staff were laid off or reassigned and the group was gradually sidelined and ignored.

In an ideal world I think the PFAC structure could work - but it needs committed active support from the parent organization, experienced vocal membership, and some kind of enduring mandate that ensures they'll survive mergers, restructures and power struggles.

This is why independent patient-led organizations like PAN are essential, to enable continuity for community and network building - because structures like PFACs that rely on other organizations for their existence can be dissolved with little or no warning.

[Alies Maybee]

@Chris-Johnston I had a similar experience on the PFAC for my local hospital which was supported by the CEO and the Sr. VP attended all our monthly meetings. We were involved with setting strategy, offering feedback on policy and projects where it was listened to and often acted upon. AND THEN... we were merged with another hospital. All the senior staff went, the PE folks were laid off and replaced with very much more junior ones from the other hospital. And we started from scratch.

I left. Been there, done that.

This is a big area of concern and future development and support.

[Debra Turnbull]

@Chris-Johnston @Alies-Maybee Oh wow...

I came to the PFAC game much later. Currently, I'm at all 3 levels: my local hospital, the provincial Ontario Health Team, and nationally with PAN. It enables me to see the changes and flaws of the system.

We need PAN. It's arms-length approach and TRUE representation of the patient perspective is the only valid voice. Yes, squabbling between the provinces will continue, however, the existence of several past Health Ministers meetings gives me hope. People are screaming for healthcare.

Interestingly, I'm seeing a small shift in our local hospital. Our Digital Solutions PFAC has the Medical Director in attendance. In the beginning, we were being dictated to with many presentations. We patients were relegated to the CHAT where we debated what was being said... and sometimes disagreeing. That still continues, however, the last meeting I noticed the Med Director quietly listening while some of us discussed - on camera. Small shift; but things are slowly changing. Now, are they sustainable - that's a different story,

Here's the one thing that Ontario has done - tie the money to the patient voice. The last fiscal round, the TPA (transfer payment agreement) clearly stated that patient presence in operations and projects was necessary... otherwise they don't get money. (I could not tell you the specifics; they're not going to let me see the actual TPA.)

There is no excuse for tokenism. Tie the money to the patient voice - and pay the patient advisors. This is how momentum and sustainability gets built.