I'm going to start this with some facts:
- The COVID-19 pandemic is not over
- Everyone is at risk, but especially those of us with chronic illness, disability, and pre-existing conditions
- The risk is not just of acute infection but of long covid. Those of us who already experience chronic illness have a unique window on what that means in terms of impact on our lives, how the world treats us, and how difficult it is to get good care.
For the past year I've been on the steering committee for a health care quality improvement conference that I've been involved with in some form or other for about the past six years. To be honest, it was the first conference I attended as a patient partner where I really felt like my participation was welcomed, where I was making a difference, where my lived expertise was valued. I've lauded the organization and the conference as an example of how to follow and surpass the values of the #PatientsIncluded Conference Charter. I felt safe. It was an honour to be chosen to be on the steering committee when I applied. Even though the patient partner position wasn't compensated (something I fiercely advocate for), I felt it was important to be there, on the inside, talking about how to even further bring forward lived expertise and lower barriers, including changing policy on compensation.
The conference is in one month. A week ago today I emailed a letter of resignation to the steering committee, including the representatives from the organization. This was an incredibly difficult and sad decision.
The decision was made some time ago to shift into an in-person conference with no hybrid version. At the time, there were still mask requirements in our province. When these requirements were dropped, I brought up at meetings and through emails the importance of keeping mask requirements at a health care conference - especially one that welcomed and purported to create an inclusive, barrier-free environment for patient partners attending. When it became clear last week that this accommodation could not be made, I had to make the decision that I could not attend in order to keep both myself and my family safe and made the further decision to resign from the steering committee. I'm posting the full text from my resignation letter below.
22 April 2022
To the QF22 Steering Committee Members, and to the BSPSQC staff,
It is with a heavy heart that I write this email to submit my resignation from the BSPSQ Quality Forum 22 steering committee and to recommend that QF22 remove its self-accreditation as a #PatientsIncluded conference.
It has been a valuable experience working with you all for the past year to make Quality Forum 22 (QF22) happen. I was so happy to be one of the two patient partners chosen to be on this committee.
I have previously expressed my concern we are not planning for mandatory masking at QF22 because of the risk it poses to vulnerable patient partners. While I have been advised by the Council masks will be recommended, they will not be required which means patient partners and other conference attendees who are vulnerable will have to risk their own health, or the health of vulnerable family members to attend the event. Other medical conferences have made the decision to enforce masking, but here the decision here has gone the opposite way.
As a patient partner on this steering committee, part of my role includes speaking up to do things in ways that are both safe and equitable. Too often, patient partners do not know that they have accessibility rights, or that there are better ways of doing things. Equity means giving opportunity to those who have the most barriers. In this case, those who have the most barriers are those who have the most vulnerability to COVID-19.
As a vulnerable person who recognizes the risk of airborne transmission, of long-covid, as a member of a household who has other family members who are vulnerable as well, my disability accommodation requires mandatory masking. I am unable to attend QF22 – the conference I have spent the past year helping to organize, as my disability accommodations are not being met, nor are those who fall into the same risk category as myself. Consequently, QF22 no longer meets clause 4 of the Patients Included Conference Charter.
Patient Partnership requires hard work in order to be diverse and equitable. My late father once told me that if it feels like the decision I need to make is really hard, it’s probably the right decision. Requiring masks would have been a hard decision. I imagine removing #PatientsIncluded designation will be a hard decision. Writing this letter was a hard decision.
I think about my dad’s words a lot. I try not to run away from the hard decisions.
Wishing you all the best in your future endeavours,
Isabel Jordan.
