Patients’ views on what matters most in treatment outcomes

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By Sarah Berglas and Tamara Rader

When I was pregnant with my second child, a midwife was responsible for my prenatal care. I thought she was marvellous because she did not presume to know my priorities for pregnancy.  My midwife asked, listened, and applied her knowledge to my priorities. Rather than overwhelming me with facts, or delivering strict instructions or unwanted advice, my midwife used her wealth of knowledge to address my needs. 

-Experience of Sarah Berglas, Patient Engagement Officer at CADTH

Is it possible to take this approach – of seeking patients’ priorities and using evidence to address those priorities at an individual level – and apply it at a population level?   CADTH – the Canadian Agency on Drugs and Technologies in Health – is working to do just that.

CADTH is an independent agency that finds, assesses, and summarizes research on drugs, medical devices, diagnostic tests, and surgical procedures.  Using evidence – including patient perspectives and evidence applied to patients’ priorities – CADTH provides advice to help address questions raised by decision-makers across the Canadian healthcare system, including policy makers in ministries of health, regional health authorities, hospitals, and at public drug plans.

To do this, CADTH may start by examining the available research on clinical effectiveness, safety, and cost effectiveness as well as the associated ethical, implementation, and environmental issues. But research on the perspectives and experiences of patients can also be sought and evaluated. How to evaluate this type of research can differ from other types of studies and often involves drawing out new and different ideas from each individual study. These different ideas can then be grouped into themes with each theme helping to identify specific factors that impact how patients and their caregivers experience their illness and treatment. Awareness of these factors can help to support CADTH advice and healthcare decisions.

However, the evidence CADTH uses in its work isn’t limited to what has been published in medical journals. Patient groups regularly contribute to the CADTH Common Drug Review and pan-Canadian Oncology Review. Both programs make recommendations to Canada’s provinces and territories (except Quebec) or to the federal, provincial, and territorial public drug plans to guide their drug funding decisions.

Not all new drugs are publically funded; public drug budgets are not limitless. Showing that the drug works in clinical trials is necessary for the drug to become available in Canada, but is each drug worth its price tag? Will it offer good value for money?

Determining value is no easy task. When asked, clinicians, researchers, economists, and patients can have different ideas on what should be considered to determine a drug’s value.  In 2010, CADTH began asking Canadian patient groups what treatment outcomes really mattered to patients, prior to the assessment of a drug’s clinical and cost-effectiveness. The insights from the patient groups are included in each drug assessment, and later on, to help CADTH reviewers, committee members, and public drug plans understand the relevance of trial results to the daily lives of patients.

From patients, we hear about symptom relief, slower disease progression, and avoiding death. These outcomes are often tracked in clinical trials. However, we also hear insights on avoiding hospitalization, reducing the need for rescue medications, lowering costs for treatment, avoiding dependence upon a caregiver, and having the mental and emotional ability to engage in activities of daily living, and more.  Unfortunately, these insights are often not captured in clinical trials.

Patient voices – heard directly or via published literature – offer valuable insights on the impacts of treatment in the context of living with a chronic condition. Patients can identify whether the benefits of treatment outweigh the harms of that treatment on other aspects of their lives.  With these perspectives as part of the evidence base, both health care providers at an individual level, and health policy makers at a population level, can address patient priorities.

If you would like more information on patient contributions to CADTH Common Drug Review, pan-Canadian Oncology Drug Review or our health technology assessments of medical devices, procedures and diagnostic tests, visit: www.cadth.ca/provide-input .

And if you’d like to learn more about CADTH, visit www.cadth.ca, follow us on Twitter: @CADTH_ACMTS, or talk to our Liaison Officer in your region: www.cadth.ca/contact-us/liaison-officers.

Sarah Berglas and Tamara Rader are Patient Engagement Officers at CADTH.