How to listen to (the right) patient voices?

October 25, 2016

Ulrik Kihlbom, Academic co-lead of PREFER's methodology work packageWe all think patients’ voices are important. But how do we make sure we listen to the right ones? Patient engagement and patient perspectives have come into focus in health care in recent years. Though this is especially true for the clinical setting, this development can be expected to continue for decision-makers at other levels.

We are just starting to research these questions in a project called PREFER. The aim is to establish which methods to use to bring in patient perspectives into important decisions regarding medical drugs; decisions made by different stakeholders, such as physicians, regulatory and reimbursement authorities, and the industry. In short: how and when should decision makers listen to the patients?

But, how can we make sure that the methods enable decision-makers to listen to the right patient voices?

Now, the expression “the right patient voices” should plausibly be understood as comprising several aspects such as being representative of the actual views patients have, being adequately informed, and as being non-biased. Each of these aspects require thorough consideration and also methodological development. I am myself responsible for one task that will specifically address these questions. One of the many intriguing issues here is when, during the process of falling ill, coming under treatment, and hopefully convalescing, a patient’s voice should be listened to? The patient’s preferences will probably change during the trajectory of illness. Imagine that you fall seriously ill, are treated and recover, and suppose also that your preferences for a risky treatment change during this period of time. Do you know when your preferences are such that your physician should listen to them? And when they merit less attention? I am myself far from sure how to answer this question.

Another set of questions concerns how the (right) patient perspective should be incorporated into the decision making. How, for example should a reimbursement authority weigh the patient perspective against cost-effectiveness when making a decision of subsidising a medical drug? Or how should a regulatory authority, such as EMA in Europe, FDA in the US, and Läkemedelsverket in Sweden, weigh patient effectiveness against safety concerns? It seems fair to say that everybody agrees that the patient perspective should have a weight, but no one has an established scale.

These are some of the very hard and intriguing questions that the PREFER project will address over the coming five years. 33 partners from academic institutions, patient organisations, health technology assessment bodies, small companies and the pharmaceutical industry are putting their heads, competence and resources together. Uppsala University is coordinating the project, with CRB’s director Mats G. Hansson at the helm. Apart from me and Mats, Josepine Fernow, Elisabeth Furberg, Jorien Veldwijk and Karin Schölin Bywall at CRB are involved in PREFER. We are looking forward to interesting research questions, but also to learning by working in, and leading, a public-private partnership of this size.

In the autumn of 2021, the project will issue recommendations. By then we will know better how decision makers may find and listen to the (right) patient voices. And how patients’ voices can make themselves heard in the decisions of regulators, health technology assessment bodies, reimbursement agencies, and pharmaceutical companies.

Ulrik Kihlbom

About PREFER: The Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 115966. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA. The contents of this text reflects the author’s view and not the view of IMI, the European Union or EFPIA.

This post in Swedish

The Ethics Blog - Exploring preferences


Moody teenagers? Giving them a greater say in health policy might solve this

March 18, 2015

Terry FlynnWe have all heard of moody teenagers. Maybe we have them, or can remember being one. Recent research with my Australian colleagues suggests they may genuinely have more difficulty living with poor mental health than adults do.

Specifically, compared to the general public aged 18+, they are more likely to view mental health related impairments as being worse than physical disabilities.

This is not just an academic curiosity – if true, it means society is probably under-investing in child mental health. To explain why, we must first understand how most European countries decide on health funding priorities.

In general, disabilities with the greatest capacity to benefit from treatment are prioritised. To find out whether pain, depression, or some other, physical, impairment to health is worst – and therefore has the greatest potential benefit from treatment – nations conduct large population-based surveys. These require adults to make choices between lots of possible impaired health states in order to find out just how bad these are, relative to each other.

Of course, people often disagree on what is worst, and by how much, so decisions must be made as to whose values matter most. European nations generally agree that it is unethical to allow the rich to dictate what disabilities are most deserving of resources. Instead of “one € one vote”, it is “one person one vote”: taking a simple average of every adult’s values does this naturally.

Whilst this sounds fair and democratic in terms of process, it could be leading to uncomfortable outcomes for our moody teenager. Why? Well, if poor mental health is genuinely worse for teenagers than adults believe it to be then mental health interventions might not get funded: for example, if adults think pain is much worse, pain medications will be prioritised instead. This is because only adults are being asked for their health values, not teenagers.

So perhaps adults just don’t remember what it’s like to be young and we should use the teenagers’ values for health interventions that affect them?

Maybe not. There is a saying “age brings wisdom” and perhaps adults’ greater experience of illness means their values for mental health impairments are the correct ones. Maybe younger people have simply not experienced enough in life to know what aspects of illness are really worst. After all, immaturity is one reason why younger teenagers are not allowed to vote.

The ethical issues surrounding at what age teenagers can have sex, vote and make independent decisions in public life all become relevant here. However, “one person one vote” has one more disturbing implication that is relevant for people of all ages. By taking an average of everyone’s views, national health state value surveys include lots of healthy people who have no idea what it is like to live with severe illness. Does this matter? Well, it turns out that to the depressed patient in desperate need of a new anti-depressant it probably does.

Patients and the general public tend to disagree on which is worst – extreme pain or extreme depression. The general public gets the final say and my next blog entry will discuss how and why we might use the health values of patients themselves in priority setting instead.

Terry Flynn

We want to be just - the Ethics Blog


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