Authentic Patient Engagement: Pipe Dream or Reality at the 2017 CADTH Symposium
2017 CADTH SYMPOSIUM
MEASURING VALUE IN THEORY AND THE REAL WORLD
Disclaimer: I was offered and accepted a travel grant from CADTH to attend the symposium as part of a patient engagement initiative. I am an Occupational Therapist, a Masters in Rehabilitation Science student at UBC, a metastatic breast cancer patient and advocate with MBCAC.CA. I advocate/navigate as a volunteer in mental health, mild brain injuries and all cancers. Opinions are my own and descriptions are based on my own perception/understanding.
I learned about PCODR in 2013 when I advocated for access to Perjeta. I was diagnosed with metastatic breast cancer (MBC) just days after it had been approved by Health Canada. My extended health benefits initially paid and I had astounding results. One month later, I lost funding due to collective agreement changes. I couldn’t find sufficient financial assistance so I wrote letters; I was desperate to stay alive to raise my children. I wrote to PCODR, BCCA, politicians, BC Pharmacare, union, employer, charities and advocacy groups. My husband’s plan covered a few treatments before I gave up hope because of a lifetime limit. Friends hosted a fundraiser and I was overwhelmed with Whistler’s generosity. BC funded Perjeta 7 months after HC approval. Advocacy was exhausting so I stepped away.
I became part of a small group of Canadians who are creating a national advocacy group, www.MBCAC.ca. This led to involvement in CAPCA roundtables. I learned about the CADTH symposium and it piqued my interest.
Perjeta led to NED (No evidence of metastatic disease) since 2014. I am lucky to be an exceptional responder. I remain devastated about MBC because most women and men continue to die by 5 years. In 2016, I enrolled in the rehabilitation science master’s program at UBC and have learned about evidence based medicine, writing, educating, and clinical reasoning to date. I am working on a concept framework for HTA based on recent studies to help me understand the process.
- I was embraced “wearing all my hats” in health care and wasn’t constrained by any one identity
- I made meaningful connections with patients, advocates, students, researchers, clinicians, philosophers, industry, HTA experts and CADTH staff and leadership
- I felt patient engagement was authentic
- Throat-singing in opening plenary
- Inspiring and compelling plenaries
- Patient voices from our informal cocktails to panels
- Indigenous issues panel: the panel embraced me as wife and mother to Indigenous Canadians
- Brian O’Rourke accepting new information about cultural safety with humility.
- Patient engagement by CADTH staff warm and encouraging
- Learning to “Tweet” and gaining recognition for it (though not sure that’s a good thing).
Workshop: How to Argue about Ethics and Value? Applied Philosophy for HTA?
I was drawn to ethical reasoning because of my recent clinical reasoning course. We reviewed scenarios using new argument strategies. I learned to identify implicit value assumptions, create deductive arguments, and evaluate value claims. I learned how to use principles, consequences, and comparisons in ethical discourse. The “trolley dilemma” highlighted how values could change depending on context. I would like to learn more about using 1rst person ethics in decision-making through narrative and case-based reasoning to incorporate more patient engagement.
Workshop: Making Tough Decisions: An Interactive and Deliberative Process
HTA is very challenging when dealing with uncertainty. Economic and political contexts are more difficult for me to understand. Using a case study and deliberative framework, small groups reviewed an orphan drug. CADTH supported us without influencing our decisions. I was in the only group to recommend, “Yes, reimburse with conditions.” We felt the small studies were appropriately powered for the target population and felt patient input reflected outcomes. We didn’t want to “miss the boat” on innovation thus discouraging research for the rare condition. Finally, we proposed a condition not in use at present: real world evidence with re-evaluation based on drug performance at 2 years. Patients, care providers, and the community can be transformed and emancipated through critical review and challenging the status quo looking through a critical social science lens. We challenged the status quo! I later learned that the HTA that inspired the mock case had been approved with conditions. However, I respected and appreciated input from all groups in this challenging case. Mostly, I empathized with the challenges CADTH and PCODR face.
Patient Group Reception and Welcome Reception and Scientific Posters
Patient groups were invited to gather and get to know each other and meet the CADTH patient engagement staff and Brian O’Rourke. It was lovely to connect with so many different types of groups. The poster reception was interesting and speaking to researchers valuable. So much great food was provided – thanks CADTH.
Opening and Plenary
Beautiful Inuit throat-singing opened the symposium. The Poor Little Puppy was especially meaningful to me. The story was of a sled dog runt raised by a young girl. She created a song to make the puppy strong. The puppy then became a leader amongst the sled dogs. I perceived this as taking the most disadvantaged of our society – different races, mental illness, additions, terminal and rare diseases - and feeding them strength and power.
This was followed by a stimulating non-fireside, fireside chat about values in the real world. Highlights as follows:
- Open hearts, open minds, deep listening
- Value different types of healing
- Provide patients with resources to help manage responsibility of health care
- Consider trade-offs
- Don’t constrain right to live/choose
- Consider broader values of society
- “Let’s make health care great again.”
- Canadian Values: Hockey, Horton’s & Healthcare
- Risk aversion IS a risk, embrace innovation
- Inequity across Canada
- Not every patient wants a Ferrari – if a minivan lets us raise our kids we’ll take it
- “Can’t close the door on hope."
Value Frameworks for Cancer Therapies: Are they Useful in the Context of Canadian Health Technology Assessments Reimbursement Decisions?
Our system differs from the US; however, we must negotiate for the same innovation. I feel this puts us at a disadvantage with respect to affordability and sustainability. Value is some sort of measure of quality and cost. Some discussed the idea of performance based reimbursement. A provider could be paid based on patient adherence and real world outcomes. Colorectal Cancer Canada is trying to create a quantitative measure of value beyond the constraints of the QALY. Rates of cancer are rising as are drug prices so we may not be able to afford it. Sadly, it will come down to budget threshold so we MUST find a way of fairly evaluating real world value. We also need equitable access to effective treatments that prove RWE. PERC shared their collaborative decision-making framework. They ask for patient input then post the details of deliberation for public access. Treatments are currently reviewed one at a time, on a first come, first served basis. This doesn’t mirror real world provision, and doesn’t allow prioritization. Academia and research focus on studies with high level of evidence. I feel this doesn’t demonstrate true value in every case and is sometimes unethical. A terminal cancer patient might only have a 50% chance of receiving the innovative drug. When the discussion turned to QALY and ICUR/ICER I didn’t really understand - I have some learning to do.
Patient and Public Engagement
How much weight do we give patient vs public values? They discussed tools to provide best outcomes based on the best evidence. Patients would like to be talked “with” and not “about”; power differential should be avoided. Is it fair to ask a fragile patient/caregiver to reflect on values of their entire cohort? We need to provide more opportunities to engage using different methods and think in a broader context. How can we truly attain consensus? Often patient groups are funded by industry. But there are few funding options for patient groups. It will take great courage to embark on the journey of engaging patients, caregivers, and the public.
· There are so many values to consider: country, taxpayer, the caregiver, patient, provider, scientist, economist, politician, industry…
· Is it possible to measure them all?
· Values change drastically when you need the innovation. You’re up against the world. You can’t understand the delay. Your life depends on it. Perhaps your children’s future depends on it thereby influencing society.
· If I got my “orphan” medication did it lead to 200 others not getting their drug? Is that fair? My head just spins.
Incorporating Indigenous Perspectives in HTA.
Best of the symposium. It was moving, honest, and I cried. Current service is based on the Indian Health Policy of 1979 and for over 100 years, the Government has been in control of health care. The BC First Nations Health Authority (FNHA) was recently created. The TRC lays out instructions for health care providers and agencies to provide equitable access. Here’s a summary of the calls to action including health
We were reminded that reconciliation is not one-time “check the box” but “forever” commitment to genuine and authentic efforts. Both sides will make mistakes, but with humility, they can be learned from. It is difficult to discuss HTA and innovation because Canada has not yet achieved fair and equitable access to basic health care. We must build capacity, co-develop and co-evaluate. I wasn’t aware that 56% Indigenous people live in urban centres. Friendship centres offer a status-blind connection to culture and support and “meet people where they are at.” In response to what Indigenous providers think about “evidence”, Dr. Anderson explained that thousands of years of healthy, happy families and babies WAS indeed evidence. There is epistemic racism – even our foundational knowledge systems favour eurocentrism. The concept of “evidence-based” might be racist.
Plenary Session 2 Highlights: There were many
(I was biased in my attention to MBC and Indigenous issues)
- Patient engagement should happen early and throughout
- Timely access to diverse and innovative treatments is URGENT in MBC; young moms are dying
- There is a difference between rights based recognition and an act of benevolence as Canada tries to reconcile with Indigenous people
- RIGHTS BASED RECOGNITION:
2. Right to informed consent
3. Right to develop and operate own health systems
4. Right for respect of context
5. Right to decide who, when and how often partners are involved
- Act of benevolence might be well intentioned but it isn’t a photo-op/checking off a box
- Requires nation to nation long term relationship, not tokenism
- Cultural safety: recognize position of power and privilege, critically reflect, maintain and recognize cultural identity
- Meaningful engagement is defined by the recipient
- We need humility and flexibility in authentic collaborative decision-making
- Allow lived experiences to guide political health infrastructure decisions
- Transparency in health decisions is a GIANT BLACK BOX
- Most vulnerable in patient groups often still ignored
- How to prepare for authentic collaboration (all patient groups): Educate yourself and don’t bring one patient, bring a cohort.
Apparently, chemo brain was in full force, or the recent concussion, and I don’t recall much about the presentations. Oops – also can’t find my notes.
Fair Pricing of Pharmaceuticals
Standing room only for this one. Seems to be foremost in all stakeholder’s minds. Some of the issues raised were around sustainability and transparency in pricing. How are drug prices set? Do prices reflect real world value? There needs to be cost recovery, return on risk, and allow for some wealth. A zone of fairness was proposed. The systems in place in Canada for negotiating price are 30 years old. The session generally raised more questions than answers. I would have liked to hear from more than one industry representative; they were alone and unsupported. Even though I might question the ethics of pricing, I feel I need more information from different industry reps to understand this better. I believe there is value to the economy, education, research, and jobs that we did not discuss and I do not understand.
Sadly, my health restricted my ability to participate in the breakfast sessions and closing plenary. I hear they were excellent. I also was disappointed to miss the night at the museum to consult with another patient engagement group. But the pictures were lovely.
I thoroughly enjoyed the symposium and felt it was accessible to all stakeholders and embraced authentic patient engagement. I certainly would attend again. Thanks to CADTH for making it possible.
Here are some great videos of the plenaries, copies of the presentations on the panels and much more for sessions I did not attend…or info I forgot: