Patients’ views on what matters most

Patient engagement brings irreplaceable insight to patient treatment choices and research. But how do you apply this at the population level? New research published today in Research Involvement and Engagement assessed the integration of patient insights into assessment reports and Recommendations by the CADTH Canadian Drug Expert Committee. Here, co-author Sarah Berglas discusses the importance of this patient engagement at the policy-level.

When I was pregnant with my second child, a fabulous midwife was responsible for my prenatal care. She respected that I was aware of what my body was telling me to do, or not to do.

More importantly, she listened to what was important to me as I balanced the changing demands of pregnancy with a challenging job and even more challenging toddler.

She asked about my week, my family, and my concerns, before taking my blood pressure or listening for the fetal heartbeat. I trusted her counsel as we discussed risks and care options.

My midwife was marvellous because she did not presume to know my priorities for pregnancy. She asked, listened, and applied her knowledge to my priorities. Rather than overwhelming me with facts, or delivering strict instructions or unwanted advice, my midwife structured her wealth of knowledge around my needs. Me: the one heavily invested in completing a successful pregnancy and delivering a healthy baby.

Is it possible to take this approach, which is not common enough at an individual level, and apply it at a population level?

Is it possible to take this approach, which is not common enough at an individual level, and apply it at a population level?

In Canada, the Canadian Agency For Drugs And Technologies In Health (CADTH) Common Drug Review recommends which new drugs should receive public funding. Not all new drugs receive funding; public drug budgets are not limitless. Efficacy was demonstrated in clinical trials for the drug to be sold, but is each drug worth its price tag?

Unsurprisingly, 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 our assessment of a drug’s clinical and cost-effectiveness.

The multiple insights from the patient groups are used to develop each drug assessment’s protocol, and later on, to understand the life-world relevance of trial data included in the assessments.

The results of our study, published today in Research Involvement and Engagement, demonstrate that individual patient insights can be integrated into population-level drug assessments.

The results of our study, published today in Research Involvement and Engagement, demonstrate that individual patient insights can be integrated into population-level drug assessments. Insights from patients were used to set outcomes of importance to determine a drug’s value, and by the expert committee to understand the clinical significance of the results of the assessment.

From patients, we heard about symptom relief, slower disease progression, and avoiding death. These outcomes were often tracked in clinical trials.

However, we also heard 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 daily life, and more. All of these insights were infrequently captured in clinical trials.

We are not alone in finding a mismatch between patients’ treatment priorities and those studied by researchers.

As patients become more engaged in health research, the things that matter most to patients will be increasingly incorporated into clinical trials.

In the UK, the James Lind Alliance brings patients, caregivers, and clinicians together to identify and prioritize the ‘Top 10 unanswered questions’ about the effects of treatments. In 2015, Sally Crowe and colleagues, compared treatments prioritized by patients and clinicians with those studied by researchers, finding marked differences.

As patients become more engaged in health research, the things that matter most to patients will be increasingly incorporated into clinical trials. Clinicians, at an individual level with their patients, and policy-makers, at a population level, will then have the data to address priorities identified by patients. Patients: those who tolerate side effects, who accept risks, who balance family life to accommodate treatment, and hopefully, who become or remain well.

View the latest posts on the On Health homepage

Comments

By commenting, you’re agreeing to follow our community guidelines.

Your email address will not be published. Required fields are marked *