PREFER PhD project on rheumatoid arthritis
In March this year, Karin Schölin Bywall started her PhD studies at Uppsala University. Her project is part of PREFER. It will look at how rheumatoid arthritis patient preferences can add value when regulators make decisions on drug development.
Editorial in Patient: Giving patients’ preferences a voice in medical treatment life cycle
In the latest issue of The Patient: Patient-Centered Outcomes Research, PREFER researchers write about the importance of this project. The list of authors includes PREFER members from academic institutions and industry, patient organisations and HTA bodies. The list of authors also includes a representative from EMA.
New research initiative on patient preferences
The UK National Institute for Health and Excellence (NICE) launches two year study on patient health preferences.
ETHICS BLOG: How to listen to (the right) patient voices?
Ulrik Kihlbom, co-lead for the work to assess methodologies, writes about some of the challenges to finding the patients voice.
Giving patients a voice in drug development
The patient perspective is important in all medical research, and particularly in drug development. This month, a public private research initiative called PREFER, is launched to assess when and how patient preferences on benefits and risks should be incorporated in decisions on medicinal products.
Value in Health publishes theme section on patient preferences
The latest issue of Value in Health incudes a themed section on the incorporation of patient preferences into health care decision making.
PREFER kick-off 27-28 October
The kick-off meeting of the IMI project PREFER will be convened on October 27-28th 2016 at the Novartis Learning Center Horburg in Basel.
HTA and Payers Stakeholder Advisory Group formed
The needs and requirements of HTA agencies and Payers regarding patient preferences differ from those of the regulators. Both focus on risk-benefit assessment, but HTA bodies and reimbursement agencies are also interested in the relative effectiveness of a product. To make sure that their needs and requirements are taken into account, PREFER has formed a HTA and Payers Stakeholder Advisory Group.
Patient advisory group formed
Patient input is crucial to PREFER's success. On September 1st, we formed the patient stakeholder advisory group to make sure the patient perspective is included at all levels of the project. The group is co-ordinated by the European Cancer Patients Coalition (ECPC),
The science of patient input
Margaret Anderson and Kimberly McClearly published a perspective paper on patient engagement in Science and Translational medicine earlier this year. According to them, creating a science of patient input is still in its early days.
Age, education and health literacy affects how people understand risk
We know that people have difficulties interpreting risk information correctly. This is a challenge for researches who want to know how people weigh possible risks against benefits. A recent study shows that age, education and health literacy affect the ability to understand risks. This means researchers need to have strategies in place for accurately measuring preferences regarding risk.
Willingness, preferences and medical products
What is it that makes patients decide to accept a treatment with serious side effects? And what would make them say no? Jorien Veldwijk explains how Discrete Choice Experiments can help find out what patients prefer.
Jorien Veldwijk is an expert in Discrete Choice Experiments, or ‘DCE’s” as they are often called. Her PhD thesis used DCE’s to look at preferences for and willingness to participate in different public health interventions. DCE’s are one of the methods that the PREFER project will look at. This method makes it possible to find out how people weigh benefits and risks against each other. She is public co-lead for PREFER’s clinical case studies, where the methods selected by the project will be tested in different patient groups.