Meaningless Patient Engagement

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Since 2005, The Canadian Agency for Drugs and Technology in Health  (CADTH) has hosted an annual symposium to bring together producers and users of evidence-based information on drugs and health technologies for productive discussions and information sharing. The CADTH Symposium has become a “must attend” event for the Health Technology Assessment  (HTA) community in Canada and beyond — attracting up to 650 delegates from key sectors, including HTA producers, health economists, government, universities, health care providers, industry and patient groups.

I cut and paste that paragraph. If I had a chance to wordsmith it, I would have changed “must attend” event to an event for those that “can afford to attend”.

Don’t get me wrong, there are good people at CADTH and they do some good work. One of CADTH’s roles is to provide guidance to provinces and territories as to which drugs should be listed on the provincial formularies. In other words, they determine which drugs are free to people on social assistance and to seniors.

Historically the actual decisions are made at the provincial level by clinical experts, pharmacists and health-economists.  In 2007 that changed when, in response to legislation, the province  of Ontario included two “patient” members” as part of the Committee to Evaluate Drugs (CED) so that the decision-making process was more transparent and that the lived experiences of healthcare consumers could be considered as evidence along with efficacy, safety and cost-effectiveness.

I was one of those first two patient members. I was excited about being part of an innovative process and mindful that the door was now slightly open for patient experiences to be considered as evidence when formulating healthcare policy. I took my role very seriously and ensured that the door did not shut on the patient experience.  In fact I stepped outside of my roles and responsibilities as a member of the Committee to Evaluate Drugs in the hopes that the door may open even further. I did my best. I gave it my all. I did this as a volunteer because I thought it would go somewhere.

It didn’t. I didn’t.

In 2008 I submitted an oral abstract for the 2008 CADTH Symposium. I felt it was important that my fresh experiences in the trenches be shared with decision-makers, policy-makers, researchers, industry and other patients.

My abstract was entitled: Treasure or Token? The impact of patient input in Health Technology Assessments. What is the best process and where lies the potential? Lessons learned from the Canadian landscape,

The cost of registering for the conference is

Standard Registration $2175.00
Associations for Healthcare Professionals, International Publicly Funded Health Sector $575.00
Canadian Publicly Funded Health Sector (Government, University, Health System, Drug Review/HTA Agencies) $475.00
Canadian Publicly Funded Health Sector in CADTH Member Jurisdictions*  (Government, University, Health System, Drug Review/HTA Agencies) $375.00
Students, Representatives of Patient Groups $100.00

Registration, accommodation and meals are generally paid for by the Government (if you work for them), research centres (if you belong to them), associations for healthcare professionals (if you are part of them) or by pharmaceutical companies (if you are employed by them). You’ll notice that representatives from patient groups can attend for $100, but these representatives are from patient groups who are heavily funded by the pharmaceutical industry in the form on unrestricted educational grants. In other words you are paid by the pharmaceutical company which is a step up in the hierarchy from being just a patient. There are high-class patients and low-class patients. It’s all very Upstairs, Downstairs.

In my capacity, I was an independent so all expenses to attend and share my knowledge and experience would come from my pocket. Not only am I am an independent, I am also a person living with a disability and received income support of $1288 a month to pay for food and shelter. Living in Toronto, that leaves little money for food and nothing for anything else. It is a meagre existence and it is easy to just be silent, but I felt that in my role as patient member that I not be silent.

When my abstract was accepted, I contacted CADTH, explaining my situation and asked if they could provide a travel scholarship so that I could present the abstract which had been accepted by the review committee for presentation at the conference, which was in Vancouver.

CADTH, with good intentions, offered me a $1,500 scholarship which would be considered as taxable income, It came pretty close to covering my airfare, hotel and meals. As a recipient of the Ontario Disability Support Program (ODSP) it is my duty to report any income, which is then deducted appropriately from my monthly entitlement.

The conference was in April of 2008 so my income for the month of May of 2008 was zero.  My rent stayed the same and so did the cost of food and May of 2008 was the first time I had to go to a Food Bank so that I could eat.

My abstract was part of a half-hour plenary session consisting of three speakers, each of us allotted 10 minutes to speak from various perspectives on patient engagement. The timekeeper was incompetent and busy texting during the presentations.My presentation was the final one and I had 6 minutes to talk about patient engagement.

I felt I was doing the right thing. Sharing my experiences and observations, providing recommendations based on those experiences and observations to improve a process that was new and exciting but also very much in its infancy.

Bottom-line, I went to Vancouver, spoke for six minutes on an emerging and important issue and the following month I did not have money for food or rent.

Was it worth it?

CADTH provides guidance, they don’t make decisions. On this occasion, they made a decision about patient inclusion that was very ill-informed and harmful.

It was not worth it?

Healthcare policy that dictates what drugs, devices and services people on social assistance can access is influenced by people who are out of touch with the experiences of people unable to work because of a disability, of being a senior on a fixed income or just plain living in poverty.

I tried my best to break through the glass ceiling that separates people living in poverty and the people that try to take care of  us, but the glass is shatterproof.

Andy Warhol once said that  “In the future, everyone will be world-famous for 15 minutes.” It’s all behind me now but I had six minutes of fame and it cost me $1500.

The themes for this year’s conference is “Here’s what the evidence says”.

Well, here’s what it says, patient engagement is only for certain patients and meaningful patient engagement is, in it’s current state, conflicted, biased and therefore meaningless.

CADTH can be contacted at:

e-mail: requests@cadth.ca

Tel: 613-226-2553

Toll Free:1-866-988-1444

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4 thoughts on “Meaningless Patient Engagement

  1. What’s good is your never say die attitude! This in itself is a “win” & here’s hoping that given time and enough noise someone has got to hear 🙂 Garfield Hugs and don’t ever give up the cause.

    Liked by 1 person

    1. Thanks, my never say die attitude is sustained by words of support from insightful and caring people as well as by serendipitous and thoroughly enjoyable connections like ours. Thanks, those Garfield Hugs are racking up some serious Frequent Flyer Miles 🙂

      Liked by 1 person

  2. Thank you for doing what you could and for writing about it here. It is possible, likely even, that you opened up someone’s mind to a new perspective in that six minutes. The outcome was frustrating, as it often is with such systems, but at least you did a good job on your part.

    Liked by 1 person

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