Contribution to PolicyMatters.ca from Harlon Davey, Patient Associate of The Cameron Institute

I remember first year Biology at UofT . In one lab exercise we studied gaming theory to test the hypothesis that altruism benefited a population and the scientific method confirmed it was true.

Something wonky happened on the way to government policy and sadly many aspects of how we make decisions and what we consider as evidence in decision making in health care has lost its connection to the value of life and the human experience, elements that are hard to capture and contain as evidence.

With good intentions, patients (some call them public members, others call them non-experts) are now being included in various components of health care technology assessments. In September 2007, I was appointed as the patient member to the Ontario Ministry of Health’s Committee to Evaluate Drugs.

It has been an amazing experience and my life is so much richer from the knowledge and experience that others have shared with me. It has also been somewhat disheartening. I will give you the good news first.

Patient inclusion has opened the door for new dialogue on how to capture how a condition impacts the quality of life, the sense of worth and the ability of one to reach their potential. Decision makers are discussing how to capture evidence that is qualitative in nature and incorporate it in a meaningful way so that it becomes quantitative and is considered as criterion for funding recommendations. It is what we, the patients, asked for as we move towards the next step; a patient centred health care system.

Having a voice at the table means that decisions are not dictated exclusively by science and economics and that the softer sciences have value and that it is OK to be emotive. It led to the Patient Evidence Submission Process in Ontario in May of 2010 that created a mechanism for patient groups to express their lived experiences of living with the burden of a disease and what expectations were for new drug therapy and how it would improve the quality of their life and what risks they were prepared to take. It was good intentions captured in policy.

It is important to have the patient voice at the table, but it is challenging for that patient or two to represent the perspectives of all patients. If you don’t mind me sharing, I am been living with HIV for 23 years, diagnosed at a time when it was a death sentence. I however have benefited from the courage and vision and the willingness to take risks of activists and advocates who changed the concept of health care drastically by demanding that a patient be at the table, by setting standards for ethics in research and equity in access and in developing community care. I was subsequently diagnosed with Hepatitis C in 2006 and then again benefited from access to treatment, albeit a difficult one for me to manage in terms of physical and psychological effects as treatment cleared the virus from my body. I am living a sweet life. I am living my life to my potential and it is true what they say, what doesn’t kill you makes you stronger and for me, most importantly it taught me the power of empathy.

Now the not so good news, not all the patient voices are represented equitably. I can’t speak to diseases that have not impacted me in any way. I have my own biases, my own values that may not reflect the true experience of a condition. I have been subject to stigma but I am aware that I can also apply it to therapeutic areas that I am poorly informed about.

Patient representatives on committees need to be supported with the skills and knowledge to reach out to patients, to hear and then pass along the narrative and bring it to the table. Ultimately those patients themselves should be in the room during the deliberation so they can participate. The composition of decision making committees should also be enhanced to include other experts such as bioethicists and nurses so that the experience and impact of one’s diagnosis and managing it is captured holistically and equitably.

Government agencies should empower patients to become leaders by investing in us as they do in any human resources. That would be meaningful. It would be respectful.

We need to be compensated for our time and effort at a rate that is equal to other experts. Patient members could be given the opportunity to earn an income so they can live in dignity, have the resources and be able to access the tools to manage their health and continue to engage rather than succumb to inertia.

It’s not just a matter of having a patient at the table, it’s a matter of having the right patient at the right table. This means consulting with patient groups when recruiting to identify leaders that represent the patient community and for government to allow them to perform outreach to patient groups, to individual patients, caregivers and family and experts who treat a condition so that they can fully bring the voice of that patient with that disease who wants access to that treatment. Investing in patients provides an excellent return on investment.

I am sure you have also heard the word silo a lot lately. Well that’s what makes patients so great, we are not silos, we move from one government sector to another as we transition through life. By managing a diagnosis we are living examples of integrated health care and chronic disease self-management. We are creative thinkers and learn how to manage scarce resources. We are not afraid to take risks because for many of us, taking risks is how we learned to survive. We have powerful stories and it is those stories, the power of the narrative that needs to be integrated back into health care, so that we can make decisions that are fair. Patients move faster than the speed of bureaucracy.

Canadians consistently rank health care as the most important issue but the majority have no idea what health care actually is other than something that is uniquely Canadian and is there when they need it and when it’s not needed, tax cuts are preferred. I was one of those people, I had no idea that there was a Committee that made decisions as to which drug therapies would be listed on the formulary for access on the public drug program. I didn’t even know what the word formulary meant.

A patient member could be a full time job contract where are responsibilities could expand to lead the much needed debate that must happen on educating the public on what health care is, why it costs so much in Canada, and also to begin the dialogue on quality of life, living wills, euthanasia and other issues related to end of life. We need to go there.

We need to define what is conflicted. We need to reconsider what is evidence. We need to create balance sheets for drug therapies that cover the costs and benefits of treatment at the pan-Ministry level.

We also do need to be patient and collaborative and respectful of each other. Research in the area of social sciences can stimulate new strategies for a better decision making process (when you have a moment to yourself, google Multi Criteria Decision Analysis and tell me what you think). We need better knowledge exchange forums where cost and geography are not barriers so that more ideas are shared, this will lead to better policy and better best practices.

Patients need to step up to the plate too. We should make it a priority to understand our conditions and how to best manage them, to explore better living in a curious and hopeful way, and not in a shameful way.

Yes, we need a lot of things, but most of them are small steps. Incremental improvements!

It’s time for Health Care Technology Assessment Version 2.0 and to move from good intentions to the next step to better and more efficient healthcare. Perhaps the first line of treatment might be that we make health care political and hold politicians accountable to waste, to innovative ways of partnering and creating solutions. The private sector does that very well, government has no excuse not to operate by the same set of standards of excellence in performance.

Let’s demand from the political parties what their platform is on sustainable health care and how they will allocate scarce resources so the public can select the leaders that represent their values towards health care. I think our goal as a society is no longer about survival of the fittest, it’s about recognizing the fact that some individuals are dealt a difficult card which makes life challenging and sometimes scary. It could happen to any of us and I don’t want anyone’s life to be scary. By valuing the challenge of disease and the will to survive and fostering strategic thinking from the individual and including it in all components of in decision making, we take care of each other and then I think we will all feel better.