Patient advisory group formed
2016-09-01
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 PREFER Patient Advisory Group consists of the European Cancer Patients Coalition (ECPC), Muscular Dystrophy UK (MDUK), European Patients Forum (EPF), and International Alliance of Patients’ Organizations (IAPO) and EURORDIS.
Patient Advisory Group members are directly involved in activities within all work packages of PREFER, sharing common expectations and ensuring that the methodologies identified correspond to the patient views, experiences and preferences. We also have a number of individual patients with rheumatoid arthritis on board through the clinical research partners at the University of Birmingham. The patient perspective is complemented by the presence of EURORDIS, who are members of a broader stakeholder advisory board.
By Kalliopi Christoforidi, ECPC
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FDA issues draft guidance on Patient-Focused Drug Development
FDA has just issued a new draft guidance to inform patients and medical product developers on how to gather information on patients’ views and needs in a way that provides meaningful data.
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PREFER stakeholder feedback session at DIA Europe
PREFER organised a lively and interactive discussion with stakeholders at the DIA Europe meeting in Basel this April. Patient representatives, participants from industry, academia, HTA and regulators appreciated the lively and interactive discussions.
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What Parkinson's patients want from treatment
Another successful public-private-patient collaboration provides new insight into what patients want from treatment. Listen to the PREFER webinar where patients in this Parkinson’s disease Project identified a new benefit they would trading off against a treatment’s burden.
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Identifying methods and criteria for testing
Well-informed patients provide the most useful preference information. According to an article recently published in Value & Outcomes Spotlight, this raises questions about risk communication, educating patients and psychological variables that affect patients’ preferences.
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Planning for patient preference studies begins
Right now, the PREFER consortium and external experts are meeting in Berlin. For two days, we will discuss and agree on methods and study design for patient preference ‘case’ studies in Lung Cancer, Rheumatoid Arthritis and Neuromuscular Disorders. If you are interested to find out more, follow us on twitter #IMIPreferBerlin18.
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PREFER: the first year
Wow! This is the singular word that comes to mind after reading the first PREFER report to our funders, the Innovative Medicines Initiative. Seeing all the completed and ongoing work shows what public and private partners can achieve through hard work and collaborative efforts.
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Watch PREFER on YouTube
Want to learn more about patient preferences and the PREFER project? Watch our videos on YouTube. Remember to like and share our videos, subscribe to our channel and click the little bell icon on Youtube to get post notifications when we upload new content.
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Follow PREFER on twitter!
PREFER is now on twitter. Follow @IMI_PREFER to stay updated and receive invitations to webinars.
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PREFER Annual meeting 2018
The next annual meeting of the PREFER project will be convened on October 25-26th 2018. We look forward presenting and discussing the project’s progress with members of the consortium and invited stakeholders.
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Preference research from the patient perspective
Diagnosed with Rheumatoid Arthritis (RA) ten years ago, An de Groef describes her journey from diagnosis, through treatment, to remission. Sharing her story on how RA affects her life, and outlook on the choices available to her at different stages of the disease.
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PREFER at ISPOR 2017
This week, four PREFER PhD students are presenting at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) 20th Annual European Congress in Glasgow.
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Data management in PREFER
Over the next five years, PREFER will gather large amounts of data from patients and other stakeholders. To ensure we handle data appropriately, PREFER has developed an initial data management plan that will evolve with time. Here, the PREFER data management team explains the thoughts behind it.
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PREFER annual meeting 2017
The annual meeting of the PREFER project will be convened on October 26-27th 2017. We look forward presenting and discussing the project’s progress with members of the consortium and invited stakeholders.
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Patient preferences in healthcare decision-making
There is a growing movement in the pharmaceutical industry, putting focus on the patient experience. The PREFER project is part of this movement. In a recent issue of CenterWatch Weekly, Bennett Levitan explains patient preference research and how PREFER intends to play a role.
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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.
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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.
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New research initiative on patient preferences
The UK National Institute for Health and Excellence (NICE) launches two year study on patient health preferences.
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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.
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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.
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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.
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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.
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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.
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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),
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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.
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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.