Although I am tempted to dwell on the Transparent Drug System for Patients Act, I am aware that my dwelling will inevitably evolve into venting because my relationship with Patient Engagement (née Member) was not meaningful.
The door was open. I tried the best with what I have to open it more. I see now that it is closing again. If I leave now, it will not shut me out.
I will let it swing back and forth like a kitchen screen door on a balmy summer night, either to welcome a breath of fresh air or to be slammed shut in haste. Everyone is in a hurry to leave things behind.
I am so much more than disenfranchised. I am hurt. I feel sad. My lessons learned were to be guarded and to be careful who you trust.
Walking wounded, sometimes sideways, sometimes back, I move towards my vision, my sense of purpose, with pride and with clarity.
I can see your silo.
Venting turns into dumping, if you know what I mean.
Non Existent Evaluation of the Patient Member Experience: Question #1
How did it feel as the voice of the patient?
Answer: Like I have been in the refrigerator to chill.
Future direction: More drink tickets.
I was just another person and then I became branded as the patient. What will become of me?
I am a sensitive man. I am living with a disability. I was not accommodated. I did not feel supported. The engaged patient becomes disengaged and the relationship becomes empty.
The elements of The Act of 2006 that were invested in, where resources were not a barrier, did well,
Enormous savings have been achieved by reducing the cost to the public purse for generic drugs and by purchasing in bulk and negotiating price. The cost of the investment was offset by the savings.
When you invest in someone, they will do better. People who succeed feel supported along their quest.
Resources, however, were a barrier in reducing Doctor’s paperwork for drugs that were on Section 8. Thus, more drugs are accessed through the exceptional access program which is overloaded and more duplication. Yet more duplication, another hurdle in the pathway from manufacturer to prescriber to consumer. More bumps in the road.
I don’t see that Pharmacists, as a Profession, have taken the initiative to expand their scope of practice to reduce costs and improve the patient experience unless getting a flu shot at Shopper’s Drug Mart is the true meaning of transparency.
I am at the grieving stage. I feel the hurt in my blood, in my bones, in my central nervous system.
Non Existent Evaluation of the Patient Member Experience Question #2
What has been the impact on the quality of your life after being the voice of the patient?
Baseline Data: Undetectable
End of commitment: Undetectable
Two year follow up: Did not follow up with patient.
Living in uncertainty and finding my way unsupported, the patient member experience of my patient journey could have been better. Been there, done that, didn’t buy the t-shirt.
The t-shirt says I AM WITH STUPID. The arrow is pointing at me.
Next time, I will stick with the scenic route.
Observational Data: Patient fed to lions.
Patient Comments: I am struggling.
Further directions: Include ethicists in healthcare decision making and policy.
I wonder where the voice of those that benefit from the Ontario Public Drug Program went.
Seniors and persons living with a disability.
The latter would be me.
whisper
difficult to treat
treat as difficult
I draw from experiential knowledge and peer support to feed and nurture me.
Looking back at the Act of 2006, notice the only aspect that addresses transparency directly is:
Strengthening transparency by giving patients a role in drug listing decisions of the Committee to Evaluate Drugs
The weight of transparency is a lot to burden one, sometimes two, but mainly one, patient with.
Non Existent Evaluation of the Patient Member Experience: Question #3
How well do you understand the concept of transparency?
Answer: Not clearly.
I wish I had a better understanding of how the role of a patient member became legislated. Who had the vision? Who was determined and why? What were the expectations?
What do you value?
What did you envision?
Non Existent Evaluation of the Patient Member Experience: Question #4
What was the overall impact of patient engagement?
Answer: My values changed.
What did the frustrated Doctor say when she found out her research grant was cancelled?
“Stop testing my patience”
Non Existent Evaluation of the Patient Member Experience: Question #5
Has your socio-economic status changed?
Answer: I am worth less.
Sometimes I feel worthless.
Patient engagement is as valuable as how you value it.
The devil is in the detail.
A Patient Voice 
I appreciate how full and raw your expression is.
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“I am hurt. I feel sad. My lessons learned were to be guarded and to be careful who you trust.
Walking wounded, sometimes sideways, sometimes back, I move towards my vision, my sense of purpose, with pride and with clarity.”
I know how you feel. The other side of it now. Keep doing your own thing. You have a lot to say that’s valuable and important.
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