Webpage live for the
10th UK Patient Reported Outcome Measures Research Conference
sheffield.ac.uk/smph/events/...
An opportunity to reflect on progress, to explore the future of PROMs, and going back to where it all began in 2016:
Sheffield #SCHARR
23rd June 2026
#HRQOL #PatientCentered #ISOQOL
👏 Today & tomorrow at #ISOQOL 2025, @eortc.org #QualityofLife Group & colleagues will present 4 posters, exploring topics like ePRO implementation, side-effect burden measurement, and creating the PRO-AE inventory.
🔍 Learn more: www.eortc.org/blog/2025/10...
#GivingVoice2Patients #CancerResearch
Amrita Basu presents development and implementation of a system for monitoring patient-reported data via ePROs in the I-SPY2 Trial
pmc.ncbi.nlm.nih.gov/articles/PMC...
#ISOQOL
Great example of papers that elucidate practical challenges of PRO capture (see rdcu.be/eMp57 )
#HRQL #PatientCentered
Great to see @hudsongolino.bsky.social presenting on AI-GENIE at #ISOQOL
Firstly, the community hears and uses the words "the #PrePrint is out" too rarely, and here it is:
osf.io/preprints/ps...
#Psychometrics #HRQOL
Conference logo for ISOQOL 2025 32nd Annual Conference
Just dialling up into the #ISOQOL conference live event.
Great opportunity that part of the conference is available hybrid / on-demand!
www.isoqol.org/events/32nd-...
#HRQL #HealthEconomics #PatientCentered
🎤 Attending #ISOQOL 2025? Today, Kim Cocks will deliver an oral presentation on the update of the @eortc.org QLQ-MY20 module for multiple myeloma.
📅 Thurs 23 Oct, 13:50 CT, Session 102: Hematology
Read more ➡️ www.eortc.org/blog/2025/10...
#QualityofLife #GivingVoice2Patients #CancerResearch
📣 Exciting news! @eortc.org, through its #QualityofLife (QoL) Group, is supporting #ISOQOL 2025 and will share insights into its latest QoL research through a series of impactful abstracts presented at the conference.
Learn more 👇
www.eortc.org/blog/2025/10...
#GivingVoice2Patients #CancerResearch
Milwaukee skyline at sunset. Text: We're attending! ISOQOL 32nd Annual Conference. October 22-25, 2025. Milwaukee, Wisconsin. Lumanity logo.
If you're in Milwaukee for the 32nd Annual #ISOQOL starting tomorrow, be sure to connect with our staff while on-site. We also have a number of posters at this year's conference. Find out more details here: buff.ly/Ilr5yb6
#ArtificialIntelligence #Conference
The YHEC and ISOQOL logos are at the top of the infographic. The text below reads: ""Come and see us at ISOQOL 2025 to hear our insights: Workshop 2: The Use of Health Economics and Outcome Research Methods in Value Based Healthcare Workshop 10: How to Use Structured Expert Elicitation in Outcomes Research 22 to 25 October 2025 | Milwaukee, Wisconsin, US
We'll be attending the ISOQOL 32nd Annual Conference in Milwaukee, Wisconsin this October. We're looking forward to connecting with fellow health economics and patient-reported outcomes experts to discuss the latest advancements in quality of life research. See you there!
#ISOQOL #PROs
Attending #ISOQOL 2025 this fall? A symposium will feature CIBMTR, highlighting the integration of PROs into clinical registries for HCT and cellular therapy, including HCT and CAR-T. Learn more: cibmtr.org/CIBMTR/About...
Screenshot of a web announcement: Reminder: Journal of Patient-Reported Outcomes Call for Papers "Patient and Public Involvement and Engagement" Submissions are due 30 June 2025. The Guest Editors of the Journal of Patient-Reported Outcomes (JPRO) are pleased to invite submissions to this collection on Patient and Public Involvement and Engagement (PPIE).
Roughly 2 weeks left to submit to JPRO's #SpecialIssue
"Patient and Public Involvement and Engagement"
www.springeropen.com/collections/...
The aim is to capture the use of #PPIE around Patient-Reported Outcomes (from PRO development to clinical implementation).
#ISOQOL #HRQOL #PatientCentered
The development of an interactive platform for applying tree-based IRT models for detection of differential item functioning is summarised in a recent #ISOQOL letter:
www.isoqol.org/bridging-the...
A related methods paper by the team:
link.springer.com/article/10.1...
#HRQL #Psychometrics
Screenshot of ISOQOL's advert for their first virtual symposium: Advancements in the Engagement and Preparation of Healthcare Providers for the Routine Integration of PROMs in Clinical Practice
New #elearning opportunity from #ISOQOL:
Advancements in the Engagement and Preparation of Healthcare Providers for the Routine Integration of PROMs in Clinical Practice
Three half days, 6th - 8th May
Full programme, speakers etc:
www.pathlms.com/isoqol/cours...
#HRQL #PatientCentered
Hard to believe that it's been a bit over one year since stepping down from the #ISOQOL board of directors. Seeing this pop up in my web search reminded me how much we accomplished and how much I enjoyed getting to know everyone!
Really happy for this is out as this is the first #RegisteredReport published in Quality of Life Research.
You can read some of the arguments we considered before launching this format here:
rdcu.be/d8Tfa
A bit more background also on LinkedIn
www.linkedin.com/feed/update/...
#ISOQOL #HRQL
We would also like to highlight the excellent content of the journal, identified by several indicators. First, QLR’s article of the year award was presented at the annual conference in Cologne. This is based on nomination from the Associate Editors, followed by their vote on the quality and originality of the nominated papers: WINNER: L.D. Bjørndal, R.B. Nes, N. Czajkowski, E. Røysamb. The structure of well-being: a single underlying factor with genetic and environmental influences. Qual Life Res 32, 2805-2816. Second place: B.J. Mulhern, T. Pan, R. Norman, A. Tran-Duy, J. Hanmer, R. Viney, N.J. Devlin. Understanding the measurement relationship between EQ-5D-5L, PROMIS-29 and PROPr. Qual Life Res 32, 3147-3160. Third place: B. Terluin, J.E. Koopman, L. Hoogendam, P. Griffiths, C.B. Terwee, J.B. Bjorner. Estimating meaningful thresholds for multi-item questionnaires using item response theory. Qual Life Res 32, 1819-1830.
All the best for 2025 everyone!
Maybe have a look at "Quality of Life Research" editor's choice finalists for 2023, that were celebrated at the #ISOQOL conference in Cologne?
You can find more key articles here:
www.isoqol.org/news-from-qu...
#Psychometrics #HealthEconomics
Links 👇
Handing in the keys to my virtual office, I am glad to see that "Quality of Life Research" has passed 2,000 submissions, making 2024 the year with (so far) the 2nd-most submissions (after 2020) in the journal's history.
Thanks to authors & reviewers supporting us! 🙇
#ISOQOL #HRQL #HealthEconomics
Screenshot of the intro of the ISOQOL news item, with the following text: News from “Quality of Life Research” Nov 21, 2024 Jan R. Boehnke, PhD, Brittany Lapin, PhD MPH, and Jessica Roydhouse, PhD Quality of Life Research Co-Editors-in-Chief The Co-Editors in Chief of Quality of Life Research (QLR) would like to thank ISOQOL and its members for their support in 2023. We received 1,903 submissions and accepted 247 articles. The journal’s editorial board managed high workloads and helped us identify relevant content for the community of (health-related) quality of life researchers. Importantly, 727 unique reviewers contributed at least one review, supporting the high quality of our content.
Read about the editors' choice papers, most downloaded, and interacted paper in "Quality of Life Research":
www.isoqol.org/news-from-qu...
The last annual update I will be involved in... 😅👋
#ISOQOL #HRQL #HealthEconomics #Psychometrics
#EQ5D #COSMIN #PROMIS
Screenshot from a streaming provider's review, indicating that someone listened a lot to Schäl Sick Brass Band (Cologne, Germany) in the last year. The message shows the cover of the album "Tschupun", with seven painted figures in a narrow boat, from left to right, someone standing with a crown and holding a burning or illuminated sword, a figure looking like a harlequin with a red bird mask sitting and rowing, a person with a bell boy hat standing with a snake around their shoulders and neck, someone in a brown suit sitting and reading, a figure with the head of a predatory bird standing in a colourful coat, holding a staff, another harlequin-like figure sitting and playing guitar, and one figure sitting at the end of the boat with long black hair and either a moon sitting on top of their head or painted with the moon in the night sky that it looks like it were just touching their head. Apparently, the person listened 856min to the band and is in the 0.1% of top listeners.
The #ISOQOL conference in Cologne was this year so impactful that I can see it even in my streaming results 😂
🎧🔊 www.youtube.com/watch?v=jAI0...
#Köln #SchälSick #BrassBand
HRQoL researchers in my circle? @jrboehnke.bsky.social #ISOQOL
Status since return from #ISOQOL
I have at least managed now to get all my data from Twitter (took them nearly 5ds instead of 24hrs).
What is the current exit protocol? Delete tweets, keep account active? Tips?
@eikofried.bsky.social @pwgtennant.bsky.social
Patient-reported measurement is the idea that patient perspectives should play an evidentiary role in determining how effective a drug is taken to be, the degree to which a hospital provides good quality care or improvements in patient-clinician communication. This idea may sound prosaic, but in fact it’s nothing short of revolutionary. It says, patient views matter – not as an afterthought, and not only at the bedside, but in the nuts and bolts of creating our evidence base, and thus in health-care decision-making. But patient-reported measures present a puzzle: How can measurement, which relies on standardization, represent patient perspectives, which, if not idiosyncratic are at least various and changeable? This tension is explored in Patient-Centered Measurement (McClimans, L 2024, Oxford University Press) a recent book that combines philosophy and conceptual questions from HRQoL research. This symposium brings “all different together” four HRQoL researchers and four philosophers into dialogue with one another as they discuss their different perspectives on four chapters of this book. This symposium thus creates a multi-directional dialogue: between HRQoL researchers and this text, between HRQoL researchers and other philosophers, and between the HRQoL community and philosophical concepts. Melanie Hawkins, PhD, Swinburne University of Technology, Melbourne, Australia Sebastian Rodriguez Duque, PhD Candidate, McGill University, Montreal, Quebec, Canada Jan R. Boehnke, PhD, School of Health Sciences, University of Dundee, Dundee, United Kingdom Alessandra Basso, PhD, London School of Economics, United Kingdom Richard Sawatzky, PhD RN, Trinity Western University, Langley, British Columbia, Canada Leah McClimans, PhD, University of South Carolina, Columbia, South Carolina, United States Kevin Weinfurt, PhD, Duke University School of Medicine, Durham, North Carolina, United States Rebecca L. Jackson, PhD, Durham University, Durham, United Kingdom
10/x Thanks for reading in case you made it this far.
I noticed that I forgot speakers' affiliations in some of the posts, so please find here again the abstract.
And once again links to the book
global.oup.com/academic/pro...
and the book review:
rdcu.be/dXACh
#HRQL #ISOQOL #PhilSky
Person talking in front of a slide that shows the heading "Time: No Gold Standard" and describes under it in some brief texts and pictures of atomic clocks how processes of ongoing coordination could be seen in this space.
7/x Leah took the last straw the audience was holding on to:
No, even when thinking about clocks and time, ongoing coordination is an issue. There is no #GoldStandard for time, its #measurement is under constant development.
#PhilSky #ISOQOL
Person sitting below a screen and looking up to it. On the screen another person is seen speaking under the heading "Thank you" and next to a barcode for more information.
6/x @ricksawatzky.bsky.social's recorded input focused on #Exchangeablility and discussed how the term #PatientCentered measurement may relate to ideographic and nomothetic methods.
You can find out more about Rick's work here:
healthyqol.com/about-ephm
#PhilSky #ISOQOL
Speaker behind a lectern and in front of a slide that shows the cover of the book.
2/x We had a good panel of presenters.
Melanie Hawkins (Swinburn UT) opened the session with a discussion of how values and assumptions impact on interpretations of scores in application contexts, and how this may reinforce and exacerbate societal inequities.
#PhilSky #Measurement #HRQL #ISOQOL
1/x It was great fun to co-organise the #ISOQOL discussion of Leah McClimans' book
" #PatientCentered #Measurement: Perspectives from philosophy and health-related quality of life"
global.oup.com/academic/pro...
You can read the book review by Sebastian Rodriguez Duque here:
rdcu.be/dXACh
#HRQL
Programme for the final day of #ISOQOL
I am looking forward to chairing #Plenary4 "Broaden the scope: health outcomes assessment beyond PROs" with a great line-up of speakers and topics.
Cologne music suggestion:
Bukahara: Tales of the Tides
www.youtube.com/watch?v=9GKm...
#HRQL #PatientCentered
Symposium 4: Patient-Centered Measurement: Perspectives from philosophy and health-related quality of life Moderator and Discussant: Leah McClimans, PhD, University of South Carolina, Columbia, South Carolina, United States Patient-reported measurement is the idea that patient perspectives should play an evidentiary role in determining how effective a drug is taken to be, the degree to which a hospital provides good quality care or improvements in patient-clinician communication. This idea may sound prosaic, but in fact it’s nothing short of revolutionary. It says, patient views matter – not as an afterthought, and not only at the bedside, but in the nuts and bolts of creating our evidence base, and thus in health-care decision-making. But patient-reported measures present a puzzle: How can measurement, which relies on standardization, represent patient perspectives, which, if not idiosyncratic are at least various and changeable? This tension is explored in Patient-Centered Measurement (McClimans, L 2024, Oxford University Press) a recent book that combines philosophy and conceptual questions from HRQoL research. This symposium brings “all different together” four HRQoL researchers and four philosophers into dialogue with one another as they discuss their different perspectives on four chapters of this book. This symposium thus creates a multi-directional dialogue: between HRQoL researchers and this text, between HRQoL researchers and other philosophers, and between the HRQoL community and philosophical concepts. Individual Presentations (order of appearance) Melanie Hawkins Sebastian Rodriguez Duque Jan R. Boehnke Alessandra Basso Richard Sawatzky Leah McClimans Kevin Weinfurt Rebecca L. Jackson
Picture of a woman (Leah McClimans) holding a mic, standing behind a lectern, and pointing to a screen on which the title of the symposium is presented: Patient-Centered Measurement: Perspectives from philosophy and health-related quality of life And the individual presenters (here in order of appearance) Melanie Hawkins Sebastian Rodriguez Duque Jan R. Boehnke Alessandra Basso Richard Sawatzky Leah McClimans Kevin Weinfurt Rebecca L. Jackson And the book front of Leah McClimans' book Patient-Centered Measurement Ethics, Epistemology, and Dialogue in Contemporary Medicine
Really glad how our symposium around Leah McClimans' book " #PatientCentered #Measurement: Perspectives from philosophy and health-related quality of life" went.
I really enjoyed working with Leah on this as well as reading her thought-provoking book:
global.oup.com/academic/pro...
#ISOQOL #HRQL
Item on conference venue poster advertising the Mentor/Mentee Reception and in brackets stating "(pre-registration required)"
And there is #ISOQOL pushing the #preregistration methodology maybe a bit too far 🤭
