News


  • Stakeholders’ preferred characteristics of preference measurement methods identified
    Collecting patients’ preferences is a way to systematically listen to the patient voice in drug development. The companies that develop medicines and the regulators that decide if they should be approved and reimbursed all have a series of decisions to make. Knowing what patients would prefer can support their decision-making. There are many different methods to collect patient preferences and all have different characteristics, but which characteristics do stakeholders find important? A recent PREFER publication reveals the answer.
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  • CIOMS report on patient involvement covers patient preferences
    The role that patient preference information can play received recognition in the recent report from the CIOMS working group XI: Patient involvement in the development, regulation and safe use of medicines. The report devotes a section to patient engagement in patient preference studies, emphasising the importance of including patient perspectives in medical product decision-making. 
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  • What it means to receive a positive EMA qualification opinion for the PREFER framework
    The PREFER project developed a framework with points to consider for methods selection. We asked the European Medicines Agency (EMA) and EUnetHTA to assess this document and issue a public qualification opinion on how useful the PREFER approach is from the regulatory and HTA perspective. In April 2022, the EMA committee responsible for human medicines, CHMP, issued a positive qualification opinion. We are now sharing lessons learned from the process and some of implications for the future. 
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  • Recommendations on how to find out what patients PREFER
    On 28 April 2022 the PREFER project launched recommendations on why, when and how to assess and use patient preferences in medical product decision-making. During the launch, we presented take-home messages from the PREFER Recommendations. Missed the event? Don’t worry! A recording is now available!
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  • Webinar to discuss EMA's opinion on 9 June
    The PREFER project is officially ending today, but our legacy continues! On 9 June at 16:00 CEST, we invite you to discuss the future impacts of the European Medicines Agency's (EMA) qualification opinion on our framework and points to consider for patient preference studies. The online event is open to everyone and free to attend! 
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  • Updated recommendations from the PREFER project
    After receiving the positive qualification opinion from the European Medicines Agency's (EMA) committee responsible for human medicines CHMP, we updated our recommendations. The new 1_1 version was published on 30 May, with minor edits, pointing to the feedback we received. 
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  • PREFER receives a positive qualification opinion from the European Medicines Agency
    The PREFER project developed a framework with points to for method selection that can be used by industry, regulators and health technology assessment bodies for how to use patient preferences as input in medical product decision making. We asked the European Medicines Agency and EUnetHTA to coordinate the assessment of our framework and its points to consider for method selection and issue a public qualification opinion on how useful the PREFER approach is from the regulatory perspective. Join us on 9 June, when we present and discuss the opinion in an online event at 16:00 CEST. 
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  • A word of acknowledgement from the coordinators
    PREFER has not only accomplished everything that we set out to do in the beginning. Significant contributions to the science of bringing patient perspectives to the centre of medical decision making, with methodological rigor based on close-up stake holder input. Large clinical case studies in several disease areas and in multiple countries with innovative insights from psychology and the field of educational tools. Providing detailed recommendations for anyone wanting to set up a preference study in their organization. 
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  • The PREFER Recommendations
    The PREFER project has developed recommendations for how and when it is best to perform and include patient preferences in decision making during the medical product life cycle. Supporting the development of guidelines for structured patient input into decision-making for the pharmaceutical industry, regulatory authorities, health technology assessment bodies and reimbursement agencies!
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  • The PREFER Recommendations in brief
    Want to know why, when and how PREFER recommends that pharma, regulators, HTA bodies and payers assess and use patient preferences in medical product decision-making? In time for the 28 April launch, we offer a summary of the key messages from the PREFER Recommendations!  
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  • Curious about what methods to use when? Recorded webinar now online!
    The PREFER project case studies utilised different methods were to elicit patients' preferences. In this webinar from 8 March 2022, we share what methods to use when, for the different decision-points along the medical product life-cycle, based on criteria that were found important for methods selection and compare methods based on the obtained outcomes of the case studies.
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  • Launching the PREFER Recommendations
    On April 28 2022, the PREFER project will launch a set of recommendations for how and when it is best to perform and include patient preferences in decision making during the medical product life cycle. The recommendations are the result of a five-year effort from public and private partners. Patient stakeholders have been involved at every level of the project, co-creating a set of recommendations that can support the development of guidelines for structured patient input into decision-making for the pharmaceutical industry, regulatory authorities, health technology assessment bodies and reimbursement agencies!
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  • Future areas of patient preference research identified: Recorded webinar online!
    We have spent the last 5 years exploring why, when and how to assess and use patient preferences in medical product decision-making. But within the constraints of a 5-year time frame and a finite number of case studies, we were not able to explore all relevant research questions. In this webinar, recorded on 7 February 2022, we review topics of future research. 
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  • PREFER at DIA Europe 2022: Enhancing patient engagement
    Patient Engagement is diverse. The PREFER session at DIA Europe 2022 will approach two different facets of patient engagement, covering both to patients’ involvement beyond study participation, as research partners in designing and returning results to participants, and the interest of patients and participants to join in and/or stay in a study.
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  • Separate good and bad in Case 2 Best-Worst Scaling
    Case 2 Best-Worst scaling, or BWS-2 for short, is one of the most popular methods for finding out what patients prefer. This is method is used to ask patients to rank different treatment attributes from best to worst. BWS-2 is a quite new method that preference researchers are still exploring. A recent PREFER study explores how the features of BWS-2 can lead to estimation problems when including both benefits and risks in scaling exercises. 
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  • Challenges and opportunities of choice modelling in health
    In his dissertation, Vikas Soekhai explores different methods used to collect patients’ preferences. There is a variety of methods available. Vikas Soekhai identified 32 and has focused particularly on two of the most popular ones in his dissertation: Discrete choice experiments and what is called Case 2 best-worst scaling. All to provide insights into how best to elicit the preferences of patients.
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  • Web-based preference studies: Why and why not?
    Covid19 has resulted in the expansion of online, web-based data collection methods. These have several important advantages over face-to-face data collection. But there are several limitations to consider. A recent PREFER publication offers a comprehensive overview of both challenges and opportunities. And suggest introducing comparisons, as well as adapting to the needs of participants. 
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  • Chronic obstructive pulmonary disease: The importance of different symptoms
    Understanding how patients value different symptoms is important for the development of patient-centered therapies. One of the PREFER clinical patient preference case studies looked at how patients with chronic obstructive pulmonary disease value different symptoms. The results were presented in a webinar on October 27. Did you miss it? The recording is now available!
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  • Launching the public consultation!
    PREFER project has developed a framework with points to consider when selecting methods for industry, regulators and health technology assessment bodies for how to use patient preferences as input in medical product decision making. We have asked the European Medicines Agency and EUnetHTA to assess our framework and issue a public opinion on how useful our approach is from the regulatory- and health technology assessment perspective. Today, EMA published the draft opinion for public consultation! We now invite you and other stakeholders to give your input by 25 November 2021! 
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  • Curious about the PAVING study? Recorded webinar available!
    Decisions about whether to approve new and emerging gene therapies are impeded by the associated uncertainties, e.g. long-term outcomes. In this complex context, the PAVING study investigated haemophilia patients’ preferences for gene therapies. Learn about how the preference study was designed, what the results were, and what the impact might be.
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  • Missed the PREFER framework webinar? Recording now available
    Incorporating patient preferences into decision-making is an important part of patient-focused drug development. The lack of a clear, practical framework for measuring patient preferences was one of stakeholders' main concerns brought up during PREFER’s initial research. On 31 August, we introduced the PREFER framework for patient preference studies, with a particular focus on points to consider for method selection and the application of preference study results to inform regulatory and HTA decision-making. The webinar was recorded, and you can now watch it in full, or the parts that interest you the most.
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  • What is a patient preference? Find out in 5 different languages!
    Patients choose medical products based on preferences. But what is a patient preference? Find out in your language! More language versions are coming, but so far, we have translated our video about patient preferences to Romanian, Spanish, Catalan, Greek, and French! 
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  • Learn about PREFER in 5 different languages!
    Drugs are made for patients. And patients speak different languages. We have five new language versions of our project video! Speak Spanish, Italian, Slovakian, French, or Catalan? Learn about PREFER in your language!
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  • Curious about the PREFER research agenda? Recorded webinar available!
    On 1 July, we held a webinar presenting the PREFER research agenda and how it was developed using a series of qualitative and quantitative assessments and engaging stakeholders in planning, execution, and/or evaluation of patient preference research across the medical product lifecycle. The result of these assessments was a list of methodological questions of concern to these stakeholders. These questions were then used to guide the design of cases studies in PREFER, used to inform recommendations for designing and conducting patient preference research. In the process, we also identified the methodological questions PREFER will not be able to answer.
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  • Missed our patient involvement webinar? Recording now available!
    Patients are key in the success of patient preference studies. In our webinar on 11 June, we discussed the role of patients as partners in patient preference studies and explained the value of involving patients at the stages of design and while conducting a patient preference study as well as at the level of communication results back to patients after. Now, the recordings are available. 
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  • 6 PhD’s furthering knowledge on patient preferences
    Thanks to the efforts of six PhD students, we have been able to contribute to the science of patient preference studies beyond the scope of PREFER. In addition to their tasks in the project, they have explored PREFER research questions and methodology in their own patient preference studies, contributing valuable results to both PREFER and the preference research community. Ranging from patient preferences for gene therapy, biologics, new cancer treatments, and glucose monitoring, to how simulations can support our understanding of preferences and whether educational materials and framing of the attributes in a study will have an impact on results. 
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  • Time to discuss PREFER results!
    We are getting close to issuing recommendations for when and how patient preferences can support decision-making for industry, regulators, health technology assessors and payers. Our clinical case studies are delivering results. And we have developed a framework for patient input to decision making that is currently under evaluation by EMA and EUnetHTA and are looking forward to a public consultation process later this summer. In the meantime, we invite everyone who is interested in patient preferences and the PREFER approach to discuss our work in a series of webinars this year, and the upcoming DIA workshop in June. 
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  • Leveraging patient preference studies for development and decision making: DIA/PREFER workshop 15-16 June
    How much risk do patients find acceptable for a given benefit? Patient preferences can give us answers that can play a critical role in the development of medical treatments and throughout the lifecycle of a medical product. On June 15-16 this year, PREFER is organising a workshop together with DIA, where we will navigate through the patient preferences landscape. Starting from the PREFER project, we will explore patient involvement in patient preference studies and put the spotlight on the practical implications patient preference information can have in regulatory decision making. The workshop is open for everyone, free of charge!
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  • Miss our webinar on the value of patient preferences? Video now available!
    On 26 April, the PREFER project organised the first in a series of webinars presenting and discussing results from the project. Want to know what a patient preference is? And how preferences are different from patient reported outcomes? You can now watch a recording of the presentations. The presentations covers the actors that make decisions throughout the medicinal product life cycle, and how they can benefit from patient preference studies. We also explain what we mean by patient preference sensitive situations.
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  • PREFER newsletter out!
    The PREFER project is well on the way to delivering results. We are organising a series of webinars to present and discuss results, a workshop together with DIA on patient preferences. There is also plenty of publications to look forward to. Didn't receive the newsletter today but want to be kept in the loop? Sign up!
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  • Save the date for the DIA/PREFER patient preferences workshop 15-16 June!
    Patient preferences can give us information that is critical for developing medical treatments. But they can also tell us how much risk patients think is acceptable for a given benefit. The pharmaceutical industry, regulatory authorities, HTA bodies, reimbursement agencies and patient organisations all agree that ‘patient preferences’ need to be part of decision making on benefit and risk. But how? When? And what are the regulatory requirements for preference studies? Join us online on 15-16 June to find out!
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  • PREFER webinar 26 April on the value of patient preferences in the medical product life cycle
    What is a patient preference and what is the difference between a preference and patient reported outcomes? Join us on 26 April in a webinar to listen and discuss. We will talk about the actors in the medicinal product life cycle and how they can benefit from patient preference studies, and explain what we mean by patient preference sensitive situations.
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  • Patient preference priorities: Questions to answer for patient-centric decision-making
    Patient preference assessment is an increasingly popular approach to engaging patients in decisions across the medical product life cycle. But questions remain about how to incorporate scientifically valid preference measurements into decision-making.  Especially for decisions about medical treatment, including development, regulatory and reimbursement decisions. PREFER partners have identified questions related to the knowledge gaps that are most crucial to decision-making stakeholders. 
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  • PREFER: Patients and researchers in partnership
    Giving patients a voice in the development of treatments means we first need to listen to them. The PREFER project develops recommendations for when and how that voice can be heard through a structured approach known as patient preferences. We rely on four patient organisations to make sure the patient voice is heard in the project. Together with universities and companies, they are part of developing recommendations for when and how patient preferences can be part of decision-making on whether or not to develop a treatment, if it should be approved, become available to patients, and what to do in case there are safety concerns after it is put on the market.  
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  • Season's Greetings from the PREFER project
    The PREFER project wishes you a happy new 2021! This year has affected us all in unexpected ways. Changing how we live, how we work, and project timelines. Despite the circumstances, our students delivered two PhD theses! We stayed connected, and submitted our framework to EMA and EUnetHTA for qualification advice. Want to stay in touch? Sign up to receive our newsletter!
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  • PREFER partner MindBytes shares learnings from the project!
    MindBytes’ Scientific Integration Expert, Connor Buffel, reports the company’s participation in PREFER has allowed them to build long-term relationships with new partners, which helps them broaden their reach. Thanks to the large scale of the PREFER project, they have also been able to both validate and fine-tune the tools that they brought to the project. This year MindBytes got an order from a pharmaceutical company that they credit to their membership in the PREFER team. 
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  • PREFER's patient input to decision making under evaluation by EMA and EUnetHTA
    Patient preferences reflect which aspects of health treatments matter to patients individually and why patients choose a particular treatment (medicine or medical device) over others. We measure these preferences in a structured way, using particular methods. The PREFER project has developed a framework for industry, regulators and health technology assessment bodies for how to use patient preferences as input in medical product decision making. We are now asking the European Medicines Agency and EUnetHTA to assess our framework and issue a public opinion on how useful our approach is from the regulatory- and health technology assessment perspective!
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  • Right now in cyberspace: PREFER annual meeting 2020
    Today and tomorrow, the PREFER consortium meets to discuss the final stage of the project and go through initial results from our case studies. We are also looking at what the outputs from the project will be and understand the EMA/EUnetHTA qualification concept of the framework for patient preference studies.
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  • Patient preferences in HTA and payer decision-making: challenges and opportunities
    Patient preferences can inform health technology assessment (HTA) and payer decision-making. But application and integration may differ between countries. A recent PREFER publication explores how HTA and payer representatives think patient preferences can be implemented in their own countries. 
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  • 15 ways to listen to the patient voice
    Listening to the patient voice and understanding their benefit-risk trade-offs has the potential to improve patients’ healthcare options. Still, patient preference information is under-utilised in decision-making throughout the medical product life cycle. A recent Health Policy publication explores at which industry, health technology assessment (HTA) and regulatory decision points could use patient preference information and become part of the decision making process, allowing patient’s voices to be heard. 
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  • Preference methods to support decision making
    A recent publication identifies 13 patient preference elicitation and exploration methods that are can support medical product decision making. The study has characterised and appraised different methods. The result is a comprehensive overview based on empirical evidence of the usefulness of different methods for decisions at different stages of the medical product life cycle.
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  • Testing preference elicitation methods in clinical case studies
    Our researchers will test different methods for preference elicitation in clinical case studies. We will evaluate what patients think is relevant about their disease and its impact. We will look at which treatment options they prefer and their willingness to accept trade-offs between benefits and risks of their treatment. These methods will be evaluated at different decision points in the drug development process.
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  • Patients’ and physicians’ preferences don’t always align
    Despite having a joint objective, patients' and physicians' preferences for treatment options sometimes differ. Patients are more inclined to want acute symptoms reduced, whereas physicians are looking for treatment options that offer more long-term disease management. A recent publication from Novartis examines physicians’ preferences for treating patients with liver disease, more specifically non-alcoholic steatohepatitis.
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  • Patient input for more valuable patient preferences
    Patients want to be involved in research about them. In a paper recently published in Frontiers in Medicine, PREFER researchers explore how patients want to be involved in patient preference studies, how they want it to work in practice and where they think their contribution will add most value to a patient preference study. 
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  • PREFER in 2020: Looking forward to results from clinical patient preference studies
    To be able to recommend when and how to involve patient preferences in medical product decision making, we need to do patient preference research. This year, the PREFER project has launched three core clinical patient preference case studies in three disease areas: Lung cancer, rheumatoid arthritis and neuromuscular disorders. In addition, both academic and industry partners have added studies to the PREFER portfolio that will help us cover different disease areas, methods and research questions.
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  • Lessons learned from the joint IAHPR-PREFER symposium
    Thought leaders and experts discussed ways of facing the growing demand for patient preference information at the “Patient preferences in the medical product life cycle” symposium in Basel this summer. An event organised jointly by PREFER and the International Academy of Health Preference Research (IAHPR). In a recent commentary, panellists report on key messages and lessons learned from this event.
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  • Patient preferences in dry eye disease
    This month, two papers on patient preferences in dry eye disease were published in BMJ Open Ophthalmology. The first paper presents the consolidated data and methodology. The second paper examines country differences and preferences of patients who are affected to different degrees.
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  • Valuable patient preferences from stakeholder collaboration
    Stakeholder collaboration increases the value of patient preference studies, and the acceptance of their results. A paper recently published in Frontiers in Pharmacology shows that this is a key element of successful patient preference studies.
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  • PARADIGM reports from PREFER annual meeting: Understanding patient preferences – the next frontier in PE
    The PARADIGM project were present at the PREFER annual meeting. Want to know what EPF’s Camilla Habre (Project Officer) and Mathieu Boudes (PARADIGM Coordinator) have to say about PREFER? Here is a short report (originally posted on the PARADIGM blog onm October 31, 2019).
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  • Right now in Basel: PREFER annual meeting 2019
    Today and tomorrow, the PREFER consortium is meeting to discuss the second half of the project and how our patient preference case studies will support the project. We will also talk about how regulatory and HTA qualification and scientific advice for a framework for patient preference studies can help us have impact.
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  • Want a summary of what we have published?
    PREFER looks at how and when it is best to perform and include patient preferences in decision making during the medical product life cycle. We include patient stakeholders at every level of the project. The end-result will be recommendations to support development of guidelines for industry, Regulatory Authorities and HTA bodies. Want to know what we have published so far? In this pdf booklet, you will find a list of our publications with abstracts and links to full text.
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  • Critical need for better methodological understanding of preference methods
    Before issuing recommendations on when and how to use patient preference studies for decision-making along the medical product life cycle, learning more about the opportunities and challenges faced by stakeholders is key. An article recently published in BMC Medical Informatics and Decision Making has done just this, and offers comprehensive lists of roles, reasons, concerns and requirements for patient preference studies. 
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  • Live webinar on patient preferences in European HTA
    PREFER’s Nigel Cook is one of the featured presenters at this live webinar on patient preferences in health technology assessment (HTA) in Europe, the recent advances and future potential. 
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  • Optimizing patient preference studies
    A recent publication from PREFER lists 18 factors and situations that should be considered when designing and conducting patient preference studies. To obtain valuable patient preference information for use in decision-making, knowing what challenges to look out for, and how to overcome them, is imperative. The paper was published in Frontiers in Pharmacology this week. 
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  • Positive feedback on PREFER mid-term review!
    This summer, PREFER has gone through a thorough mid-term review by the Innovative Medicines Initiative (IMI). We are happy to report that independent evaluators concluded PREFER is an ambitious project addressing relevant clinical and methodological research questions, that aims to show how patient preference studies can support decision-making. In the report, IMI states that the work we have provided so far is of high scientific quality.
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  • Joint IAHPR-PREFER workshop and symposium
    On Saturday 13 July 2019, the Academy of Health Preference Research (IAPHR) and PREFER will host a joint workshop on good research practices for health preference studies  We will describe the basics for how to conduct a health preference study focusing on trade-offs between risks and benefits. The workshop material will build on the textbook that is currently under development by IAHPR members, incorporating the experiences of scientists working with PREFER.
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  • Patient preferences, consensus & standardised procedure
    Despite growing interest, the use of patient preferences in decision-making is hindered by a lack of standardization. An article recently published in Patient captures stakeholder perspectives on patient preferences in decision-making.
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  • Measuring patient preferences
    Both industry representatives, academics, regulatory and patient groups suffer from a lack of knowledge of the range of methods used in patient preference studies. A recent publication provides insight into the many methods used. 
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  • PREFER Newsletter: New issue out!
    A new issue of the PREFER newsletter is out! Want to receive updates from us in your inbox? Subscribe, or follow us on YouTube, LinkedIn, & Twitter.
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  • Patient preferences in early drug development
    If a pharma company aims to meet the needs of patients, patient preferences should be included at the very beginning: From phase 1/early development, through to the post-marketing phase of any medical product’s life cycle. A recent paper from Novartis, one of the IMI PREFER project partners, argues for aligning stakeholders in early drug development to ensure development plans best meet patient needs.
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  • Talking about terminology: PREFER glossary
    In a project like PREFER, a glossary helps researchers by providing a common taxonomy for our day-to-day interactions. We have agreed on definitions for a number of terms that we use in reports and publications. The definitions in the PREFER glossary are written for expert stakeholders (people in academia, industry, regulators and HTA bodies). We are also working to develop video that explains some of these terms in plain language.
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  • Patient Preferences – the science of tomorrow
    At DIA Europe 2019, Conny Berlin, Rocco Falchetto, Ardine de Wit, and Christine Radawski presented information on the importance of patient involvement, and the rapid evolvement of the science of patient preferences. The close interactions between patients, researchers and decision makers show how it is possible to establish a new approach to support medicinal development. The presentations focused on the work of the IMI PREFER project and highlighted an example where patients views could be extremely useful in regulatory decision making.
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  • Using psychological instruments to understand patients’ preferences
    The interest in patients' preferences has grown in recent years. Regulators, HTA-bodies, payers, the pharmaceutical industry, and patient organizations are asking for patients to be involved in healthcare decision-making. Most of the attention on this topic has focused on how to elicit patients’ preferences, and not so much on why patients form specific preferences and why they take certain kinds of decisions. A new review article from PREFER maps the field.
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  • PREFER at Patients as Partners Europe
    Stakeholders from industry, patient advocacy organisations and policy makers came together at Patients as Partners Europe 2019. Couldn’t make it? Speaker presentations are now available online, and PREFER’s Berkeley Phillips was there. Find out what he has to say.
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  • PARADIGM: Results from survey on stakeholder expectations on patient engagement
    Patient engagement in the medicine R & D process is largely underutilized, despite the benefits of co-creation in delivering health solutions that meet patients’ defined needs and improve health outcomes. The PARADIGM project have surveyed stakeholders' expectations, needs and aspirations when it comes to patient engagement, and results are now available!
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  • PREFER case studies at DIA Europe 2019
    This year, PREFER is present at the DIA Europe meeting to discuss patient preferences and present our case studies. On February 6, PREFER chairs a session on patient preferences. The following day, Ardine de Wit, academic lead for PREFER's clinical patient preference case studies, will present our study portfolio in a session on patient involvement in clinical research. Don't miss us it if you are there!
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  • Interested in patient engagement? Subscribe to the PARADIGM newsletter!
    Patient engagement is becoming increasingly important for the pharmaceutical industry, health technology assessment bodies and regulators. PREFER has signed a memorandum of understanding with the PARADIGM project (Patients Active in Research and Dialogues for an Improved Generation of Medicines). We encourage everyone who is interested in patient engagement to sign up to the PARADIGM newsletter!
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  • Season's greetings from the PREFER consortium!
    Season's greetings from the PREFER consortium! And best wishes for 2019. We look forward to new challenges in the coming years. 32 partners representing academic research institutions, patient organisations, HTA bodies and the pharmaceutical industry, working together to include the patient perspective in medical product decision-making.
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  • PREFER: First newsletter issued!
    Want to receive updates from us in your inbox? Today, PREFER sent out our first external newsletter!
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  • Patient preferences in HTA: ISPOR Europe 2018 Issue Panel
    The PREFER project was well represented at the latest ISPOR Europe Congress in Barcelona on 10-14 November, 2018. We presented four posters with results from the project. And organised one Issue Panel on the use of patient preferences in Health Technology Assessment (HTA).
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  • PREFER: first two years
    The PREFER consortium met in Leuven on October 25-26 this year. Celebrating our achievements so far, and outlining strategies for years to come. We used the opportunity to plan the next big step: our upcoming clinical patient preference studies! 
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  • PREFER poster wins prize at IMI 10th Anniversary Scientific Symposium
    PREFER was present at the Innovative Medicines Initiative’s 10th Anniversary Scientific Symposium in Brussels on October 22-23. At the meeting, Chiara Whichello, PhD student from the Erasmus University Rotterdam, won third prize for her poster on characterising and appraising patient preference exploration and elicitation methods in PREFER.
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  • PREFER celebrates 2 years at annual meeting #PREFER2years
    The PREFER annual meeting of 2018 is all about celebrating accomplishments. Hosted by KU Leuven and Janssen, the PREFER consortium meets 25-26 October to discuss our plan of action. The work we have done so far outlines what comes next: case studies, recommendations and further collaboration efforts. 
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  • Factors influencing the value of patient preference studies
    Finding out what patients prefer is becoming increasingly important in Industry, HTA and regulatory decision-making. The PREFER project has looked at what the literature can contribute to our understanding of when and how to ask patients what they prefer.
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  • PREFER: Open science, open access
    The PREFER project is committed to open science. We have promised our funders, the Innovative Medicines Initiative, to ensure all our publications are available to those who do not have, or cannot afford, subscritpions to scientific journals. This is made possible through postprint publishing in the Uppsala University library's DiVA database, also known as green open access.
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  • PARADIGM and PREFER connect to make patient engagement in medicines R&D a greater reality
    Today, the two Innovative Medicines Initiative (IMI) consortia PARADIGM and PREFER issue a joint statement on the signing of a Memorandum of Understanding. The document aims to enhance the cooperation and collaboration between the two projects. For both projects, this represents an opportunity to avoid duplicate efforts and maximize results.
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  • From the lab to you: How do medicines get approved?
    Want to know how medicines move get approved in Europe? Watch this video from the European Medicines Agency (EMA) to find out!  
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  • Whose preferences are we collecting?
    PREFER looks at how to collect & share patient preferences and when to include them in medical product decision-making. Want to learn more about who we are asking? Watch our new video clip to find out who will tell us what patients prefer.
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  • Patient engagement: what comes next?
    In a recent guest column in Clinical Leader, Barbara Lopez Kunz, global chief executive of DIA writes about what is next in patient engagement. She lists PREFER among organisations that drive research and policy activities for guidance on patient-centricity in benefit-risk assessment and systematic incorporation of data on patient perspectives in product approval applications.
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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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  • 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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  • 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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  • 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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  • 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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  • 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.
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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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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 the European Federation of Pharmaceutical Industries and Associations (EFPIA).