Identifying methods and criteria for testing
2018-05-17
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.
There is a growing need to evaluate the efficiency of methods for collecting well-informed preferences and to determine why, when and how patient preferences are most useful for different stakeholders, say the authors of Giving patients’ preferences a voice in the medical product lifecycle: why, when and how?
PREFER spent the first year identifying methods to collect patient preferences: Information that can help guide decision-making for the Pharmaceutical Industry, Health Technology Assessment authorities, Reimbursement Agencies and Payers, as well as patients themselves.
“We have found that stakeholders in PREFER agree that patient preferences can inform benefit-risk decision making for medical products. However, there is a lack of understanding of when and how patient preferences should be included in the medical product life cycle”, says Esther W. de Bekker-Grob, one of the authors.
The authors have led PREFER’s work to identify methods and criteria for testing and to fill existing knowledge gaps by describing why, when and how to include patient preferences in the medical product life cycle. The authors identify a need for further development and evaluation of methods for collecting well-informed patients’ preferences.
So far, the work has included a literature review, interviews and focus groups with patient organisations, physicians, regulators, HTA bodies, industry experts and academics to find out what their concerns, needs, desires and expectations are. PREFER is a public-private partnership with researchers and experts from Industry, HTA and Academia. Right now, the teams involved are working to make results available in publications.
As this work comes to an end, a new team begin testing the results in a number of clinical case studies, looking specifically at three different patient groups: Rheumatoid Arthritis, Neuromuscular Disorders and Lung Cancer. Stay tuned for more to come!
By Anna Holm
-
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!
-
Giving patients with Muscular Dystrophy a voice in drug development
PREFER partner Muscular Dystrophy UK is commited to giving patients a voice in drug development. In PREFER, they work with pharmaceutical companies, academics, patients, healthy technology assessment bodies and regulatory authorities to ensure the rare disease patient perspective is present in the recommendations coming out of the project.
-
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!
-
Asking patients what they prefer
Decision makers need to understand how patients themselves value the risks and the benefits associated with the treatments of their disease. Karin Schölin Bywall's PhD project has received feedback from the PREFER project. To prepare her preference study, she decided to approach the patient group immediately.
-
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.
-
Including patients in decisions about drugs
Companies and authorities sometimes involve individual patients and patient representatives in their decisions. By using preference studies, we can find out what larger groups of patients think about drugs. And how they weigh the good and the bad against each other. But what do patients think about being included in these decisions? In her PhD project, Karin Schölin Bywall, interviewed Swedish patients with Rheumatoid Arthritis to find out what they think about patient involvement in decisions taken by the authorities that approve drugs.
-
PREFER: First newsletter issued!
Want to receive updates from us in your inbox? Today, PREFER sent out our first external newsletter!
-
PREFER: Rheumatoid Arthritis Case Study
Rheumatoid arthritis (RA) is an autoimmune disease that causes painful joint inflammation. If it is not controlled, the inflammation can lead to deformity and loss of function. RA often runs in families. One of PREFER’s clinical patient preference case studies will focus on people at risk of developing RA in the future.
-
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).
-
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!
-
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.
-
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.
-
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.
-
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.
-
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.
-
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!
-
PREFER and neuromuscular disorders
Cecilia Jimenez-Moreno, Research Physiotherapist and PhD leads the upcoming PREFER patient preference case study on neuromuscular disorders (NMD). She shares the task with Dr. Grainne Gorman. Both are involved in NMD research at Newcastle University
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Follow PREFER on twitter!
PREFER is now on twitter. Follow @IMI_PREFER to stay updated and receive invitations to webinars.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.