What are patient preferences - Isabelle Huys | PREFER webinar

Summary

The transcript discusses 'PREFER', a public-private partnership focusing on patient preferences in healthcare. It involves pharmaceutical companies, academic institutions, and agencies to measure and implement patient preferences in decision-making processes. The project, initiated in 2016, has conducted case studies across various diseases and aims to draft recommendations by March 2022. It differentiates patient preferences from patient-reported outcomes and highlights the importance of understanding patient values and trade-offs in medical interventions.

Takeaways

• 🤝 PREFER is a public-private partnership that involves collaboration between various stakeholders, including pharmaceutical companies, academic institutions, health technology agencies, and patient organizations.
• 🔍 The primary goal of PREFER is to guide industry, regulatory authorities, and reimbursement agencies in decision-making by incorporating patient preferences into medical product development and assessment.
• 📈 PREFER aims to develop evidence-based recommendations by analyzing insights gathered from patient preference methodologies, which began with a focus on understanding these methodologies through interviews and focus group discussions.
• 📚 The project has been conducting case studies in various disease areas to apply and analyze patient preference methodologies, some of which have been completed and are under analysis.
• 🏥 PREFER is also involved in an IMI (Innovative Medicines Initiative) qualification procedure to gain approval for the patient preference study at the EU level.
• 🌐 Despite challenges during the COVID-19 pandemic, PREFER has continued its case studies and aims to draft recommendations by the end of March 2022.
• 📊 Patient preferences are distinct from patient-reported outcomes, focusing on the qualitative and quantitative assessments of the desirability and acceptability of specific health intervention alternatives.
• 🔑 The term 'attributes' is crucial in patient preference studies, referring to the characteristics and features of health interventions or disease states that patients consider important.
• 🛠️ Patient preference studies are structured in a multi-step process, including design, conduct, and communication phases, and typically involve both qualitative and quantitative research methods.
• 📈 The quantitative phase of patient preference studies aims to quantify the relative importance of attributes, determine acceptable risk levels, and understand patient trade-offs.
• 📊 Patient preference studies can inform decision-making across the medical product life cycle, from discovery to post-marketing authorization, in areas such as clinical trial endpoint selection, benefit-risk assessments, and labeling.

Q & A

What is the purpose of the PREFER project?

The PREFER project aims to guide industry, regulatory authorities, HTA bodies, and reimbursement agencies in their decisions on how to measure and implement patient preferences in medical product decision-making, with the ultimate goal of developing evidence-based recommendations based on patient insights.

What kind of entities does the PREFER project involve?

PREFER is a public-private partnership that includes large pharmaceutical companies, smaller companies, academic institutions, health technology agencies, patient organizations, and other stakeholders.

When did the PREFER project start and what was its initial focus?

The PREFER project started in 2016 with a focus on identifying patient preference methodologies through interviews and focus group discussions to gain insights into stakeholders' needs.

What is the significance of involving patient preferences in medical decision-making?

Involving patient preferences is significant as it ensures that the patient's view is considered in decisions related to clinical trial endpoints, benefit-risk assessments, labeling, and early access, among other aspects of the medical product lifecycle.

How are patient preferences different from patient-reported outcomes?

Patient-reported outcomes are data collected on a patient's health status directly from the patient, without comparison to alternatives. In contrast, patient preferences refer to qualitative and quantitative assessments of the relative desirability and acceptability of specific alternatives or choices among different attributes of health interventions.

What are some examples of attributes that might be considered in patient preference studies?

Examples of attributes include benefits such as pain relief, risks such as hair loss, long-term health safety risks, and other aspects like the availability of information, which are important for stakeholders to make informed decisions.

What are patient preference-sensitive decisions and why are they important?

Patient preference-sensitive decisions are situations where the patient's view is particularly needed, such as when there is uncertainty or no clear superior treatment option, and understanding the patient's tolerance for risk or uncertainty is crucial.

How does the PREFER project plan to draft its recommendations?

The PREFER project aims to draft its recommendations by the end of March 2022, based on the insights gained from conducting several case studies in different disease areas and analyzing the results.

What are the typical steps involved in setting up a patient preference study?

Setting up a patient preference study typically involves a design step, a conduct step where the study is executed, and a communication step where the results are shared. These studies usually consist of both a qualitative phase to explore what patients find important and a quantitative phase to quantify the relative importance of attributes.

How does the PREFER project address the heterogeneity among patients in its studies?

The project addresses patient heterogeneity by targeting a larger group of patients in the quantitative phase of the study to reach significant results and understand how preferences differ according to various patient characteristics.

What challenges did the PREFER project face during the COVID-19 pandemic?

During the COVID-19 pandemic, the PREFER project faced difficulties in continuing its case studies. However, they managed to adapt and continue most of their studies, aiming to maintain their progress towards drafting recommendations.