A blog from the Centre for Research Ethics & Bioethics (CRB)

Tag: preferences

Research for responsible governance of our health data

Do you use your smartphone to collect and analyse your performance at the gym? This is one example of how new health-related technologies are being integrated into our lives. This development leads to a growing need to collect, use and share health data electronically. Healthcare, medical research, as well as technological and pharmaceutical companies are increasingly dependent on collecting and sharing electronic health data, to develop healthcare and new medical and technical products.

This trend towards more and more sharing of personal health information raises several privacy issues. Previous studies suggest that people are willing to share their health information if the overall purpose is improved health. However, they are less willing to share their information with commercial enterprises and insurance companies, whose purposes may be unclear or do not meet people’s expectations. It is therefore important to investigate how individuals’ perceptions and attitudes change depending on the context in which their health data is used, what type of information is collected and which control mechanisms are in place to govern data sharing. In addition, there is a difference between what people say is important and what is revealed in their actual behaviour. In surveys, individuals often indicate that they value their personal information. At the same time, individuals share their personal information online despite little or no benefit to them or society.

Do you recognise yourself, do you just click on the “I agree” button when installing a health app that you want to use? This behaviour may at first glance suggest that people do not value their personal information very much. Is that a correct conclusion? Previous studies may not have taken into account the complexity of decisions about integrity where context-specific factors play a major role. For example, people may value sharing health data via a physical activity app on the phone differently. We have therefore chosen to conduct a study that uses a sophisticated multi-method approach that takes context-specific factors into account. It is an advantage in cybersecurity and privacy research, we believe, to combine qualitative methods with a quantitative stated preference method, such a discrete choice experiment (DCE). Such a mixed method approach can contribute to ethically improved practices and governance mechanisms in the digital world, where people’s health data are shared for multiple purposes.

You can read more about our research if you visit the website of our research team. Currently, we are analysing survey data from 2,000 participants from Sweden, Norway, Iceland, and the UK. The research group has expertise in law, philosophy, ethics and social sciences. On this broad basis, we  explore people’s expectations and preferences, while identifying possible gaps within the ethical and legal frameworks. In this way, we want to contribute to making the growing use and sharing of electronic health data ethically informed, socially acceptable and in line with people’s expectations.  

Written by…

Jennifer Viberg Johansson, Postdoc researcher at the Centre for Research Ethics & Bioethics, working in the projects Governance of health data in cyberspace and PREFER.

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Part of international collaborations

People care about antibiotic resistance

The rise of antibiotic-resistant bacteria is a global threat to public health. In Europe alone, antibiotic resistance (AR) causes around 33,000 deaths each year and burdens healthcare costs by around € 1.5 billion. What then causes AR? Mainly our misuse and overuse of antibiotics. Therefore, in order to reduce AR, we must reduce the use of antibiotics.

Several factors drive the prescribing of antibiotics. Patients can contribute to increased prescriptions by expecting antibiotics when they visit the physician. Physicians, in turn, can contribute by assuming that their patients expect antibiotics.

In an article in the International Journal of Antimicrobial Agents, Mirko Ancillotti from CRB presents what might be the first study of its kind on the public’s attitude to AR when choosing between antibiotic treatments. In a so-called Discrete Choice Experiment, participants from the Swedish public were asked to choose between two treatments. The choice situation was repeated several times while five attributes of the treatments varied: (1) the treatment’s contribution to AR, (2) cost, (3) risk of side effects, (4) risk of failed treatment effect, and (5) treatment duration. In this way, one got an idea of ​​which attributes drive the use of antibiotics. One also got an idea of ​​how much people care about AR when choosing antibiotics, relative to other attributes of the treatments.

It turned out that all five attributes influenced the participants’ choice of treatment. It also turned out that for the majority, AR was the most important attribute. People thus care about AR and are willing to pay more to get a treatment that causes less antibiotic resistance. (Note that participants were informed that antibiotic resistance is a collective threat rather than a problem for the individual.)

Because people care about antibiotic resistance when given the opportunity to consider it, Mirko Ancillotti suggests that a path to reducing antibiotic use may be better information in healthcare and other contexts, emphasizing our individual responsibility for the collective threat. People who understand their responsibility for AR may be less pushy when they see a physician. This can also influence physicians to change their assumptions about patients’ expectations regarding antibiotics.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

M. Ancillotti, S. Eriksson, D.I. Andersson, T. Godskesen, J. Nihlén Fahlquist, J. Veldwijk, Preferences regarding antibiotic treatment and the role of antibiotic resistance: A discrete choice experiment, International Journal of Antimicrobial Agents, Volume 56, Issue 6, 2020. doi.org/10.1016/j.ijantimicag.2020.106198

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Exploring preferences

Ask the patients about the benefits and the risks

Pär SegerdahlAlmost no medications are without risks of side effects. When new drugs are approved, decision makers must balance risks and benefits. To make the balancing, they use results from clinical trials where the drugs are tested on patients to determine (among other things) efficacy and side effects.

But how do you balance risks and benefits? Is the balancing completely objective, so that all that is needed is results from clinical trials? Or can risks and benefits be valued differently?

It has been noted that decision makers can value risks and benefits differently from patients. Therefore, results merely from clinical trials do not suffice. Decision makers also need to understand how the patients themselves value the risks and the benefits associated with treatments of their disease. The patients need to be asked about their preferences.

Karin Schölin Bywall is a PhD student at CRB. She plans to carry out preference studies with patients suffering from rheumatoid arthritis. The task is complex, since risks and benefits are multidimensional. Rheumatoid arthritis is a chronic disease with several symptoms, such as pain, stiffness, fatigue, fever, weakness, deformity, malaise, weight loss and depression. Medications can be variously effective on different symptoms, while they can have a range of side effects. Which positive effect on which symptom is sufficiently important for the patients to outweigh a certain level of one of the side effects?

Many patients naturally want the drug to enable them to work, despite the disease. However, if the pain is relieved enough to enable carrying out the work, while the medicine has as a side effect such fatigue that the patient cannot get out of bed, then the desired benefit is not provided.

To prepare her preference study, Karin Schölin Bywall decided to approach the patient group immediately. From the very beginning, she wanted to engage the patients in her research, by interviewing them about how they perceive participating in preference studies on new drugs against rheumatoid arthritis.

The patients stated that they saw it as important to be involved in regulatory decisions about new treatments of their disease. So that decision makers understand the patients’ own experiences of the benefits and risks that such drugs may have, and what the benefits and risks mean in practice, in the daily life of a rheumatic.

Results from the interviews are reported in the journal, The Patient – Patient-Centered Outcomes Research. The article emphasizes that preference studies can lead to drugs that the patient group is more motivated to take according to the physician’s instructions, which can improve clinical outcomes in the patients. The patients further stated that as participants in preference studies they want good information about how the drug functions, about how the study will be used by decision makers, and about where in the decision-making process the study will be used.

Feedback from patients is likely to become increasingly important in future decisions on medical products.

Pär Segerdahl

Schölin Bywall, K.; Veldwijk, J.; Hansson, M. G.; Kihlbom, U. “Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis.” The Patient – Patient-Centered Outcomes Research, 2018. DOI: 10.1007/s40271-018-0344-2

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How to listen to (the right) patient voices? (By Ulrik Kihlbom)

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.

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The Ethics Blog - Exploring preferences

Moody teenagers? Giving them a greater say in health policy might solve this (By Terry Flynn)

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

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