Screen Shot 2017-07-06 at 2.24.22 PM

APERSU Newsletter -- Volume 8, Issue 1
Summer 2023

Report from Co-Directors

Arto Ohinmaa

We are pleased to update you on recent activities of the Alberta PROMs and EQ-5D Research and Support Unit (APERSU) Team.

We would like to welcome two new Research Assistants, Oacia Fair and Arafat Alam. With these additions to the team, we have increased our capacity for research and support of PROMs use in Alberta. You can read more on each of them in “Meet the Staff” section further on in the newsletter.

We will be hosting the 7th APERSU End-User Meeting on October 16 & 17, 2023 at the Delta Calgary Downtown as a hybrid (in-person or virtual) event. We are pleased to announce our Keynote Speakers: Dr. Jose Valderas of Exeter University, UK, an international expert in PROMs in primary care settings (Day 1) and Dr. Angela Stover of the University of North Carolina at Chapel Hill, an international expert in implementation science approaches for PROMs (Day 2). We previously sent a “Hold the Date” notification but please ensure to mark these dates in your calendars. More information will be sent out later in the summer regarding this meeting.

We have several projects on the go, several of which are highlighted in the newsletter – see those sections for updates on the EMPATHY Trial, the DAPHNIE Project, the Decision Aid Project, and the Primary Care Networks Working Group Update.

Jiabi Wen attended and presented a poster at the ISPOR Real-World Evidence Summit in Boston May 7-10, 2023. APERSU members have been submitting abstracts on our various research projects to several upcoming meetings, we will find out soon if they are accepted.

On behalf of the APERSU Team, I would like to wish you all a great summer and most importantly, stay safe and healthy! We will update you again on APERSU’s activities in December 2023.

You can unsubscribe from this newsletter by emailing us at

We look forward to sharing our progress with you biannually in future newsletters.


EuroQol Data for Assessment of Population Health Needs and Instrument Evaluation (EQ-DAPHNIE) Update

The overall aim of the EQ-DAPHNIE project is to create research infrastructure for the EuroQol Group that would support future research projects which have specific research objectives/questions. The breadth of potential research topics would be characterized under two broad domains: 1) Population health status (e.g., develop country-specific population norms, social determinants of health and population health inequities); 2) Comparative performance and validation of instruments (e.g., EQ-HWB vs. EQ-5D-5L).

In the first two years of this project, we have achieved the following milestones:
• Established Project Team
• Established charter for data management/sharing
• Invited EuroQol membership to propose research questions and measures
• Established a contract with Maths in Health (MiH) for survey programming and liaising with data collection agency (Dynata)
• MiH purchased and configured EQ-DAPHNIE servers
• Received ethics approval
• Finalized modules for pilot survey in the United Kingdom
• Deployed pilot survey in the United Kingdom in April, 2023
• Analyzed pilot data for quality

Later this year, we will make refinements to the survey, based on results from the UK pilot, for the first wave of English surveys in Canada, Australia, New Zealand, the United States, and the United Kingdom. We will also work on establishing the processes for data sharing with EQ-DAPHNIE co-investigators and other EuroQol members and begin planning for the second survey wave (e.g., confirm countries to target, survey adaptations, and translations).

For more information, contact the project coordinator, Hilary Short (heshort@ualberta).


The Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY) Trial Update

The Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY) project is a cluster randomized controlled trial (RCT) that was implemented in three renal programs: Alberta Kidney Care – North (AKC-N), Alberta Kidney Care – South (AKC-S), and Ontario Renal Network (ORN). To learn more about the study design, click here to read the protocol paper published in BMC Health Services Research.

While AKC-N completed the 1-year trial period in October 2019, the COVID-19 pandemic put the trial on hold in AKC-S and ORN. Data collection finally concluded in June 2021, however the ORN team experienced additional administrative delays with data access. However, we are happy to report that all regions have acquired EMPATHY data we are progressing forward with the primary analysis. The EMPATHY research team has developed a Generalized Estimating Equations (GEE) model to analyze the data within our own provinces. Next, we will employ a federated analysis as Alberta and Ontario data cannot be exchanged.

In addition to the RCT, all renal programs collected qualitative data from patients and clinicians to evaluate the routine use of patient-reported outcome measures (PROMs) for clinical care in the hemodialysis setting. The AKC-N team completed a mixed-methods analysis on how routine PROMs for hemodialysis care influence patient-clinician communication, published in Clinical Journal of the American Society of Nephrology (click here to read more). The AKC-S team also completed a qualitative descriptive study to explore patient and clinician perspectives on PROM implementation across outpatient hemodialysis units in Southern Alberta and their role in supporting interdisciplinary symptom management, published in Journal of Patient-Reported Outcomes (click here to read more). The AKC-S team has another secondary analysis underway to identify the perceived barriers and facilitators to PROMs implementation with suggested and actual implementation strategies utilized.

All renal programs have implemented sustainability plans for PROMs in hemodialysis care, with results from the primary analysis to guide official decision-making.

For more information on EMPATHY, please contact Hilary Short (


APERSU Primary Care Networks Working Group Update

Since January 2023, the PCN Working Group has met twice and continues to advance conversations on data access, sharing, and integration. APERSU recently developed simple, accessible EQ-5D-5L reporting templates and data visualizations and shared these with the working group for feedback on their use and applicability.

Along with the PCN Working Group members, APERSU plans to conduct a province-wide environmental scan of PROMs in primary care. The purpose is to identify which PROMs are currently being used and how, starting with those used in PCN mental health programming. Other objectives include understanding PCNs' capacity of using PROMs data effectively and exploring the feasibility of standardization and consistency of PROMs within PCNs. We have compiled and examined the literature and next plan to administer a survey to PCNs later this summer. We are also actively partnering with other jurisdictions across Canada on aligning and informing other activities examining PROM use in primary care.

Our next PCN Working Group meeting will be in fall 2023 to shape and discuss our APERSU End-User meeting.

The APERSU PCN Working Group continues to support PROMs in primary care in Alberta, including implementation practices, research projects, and dialogue with other PCNs across Alberta. APERSU is also continuing to offer one-on-one PCN consultations, aimed to guide and support PROMs implementation and use. If you would like more information or to book a consultation, please connect with Allison Soprovich (


Individualized Decision Aid for Total Knee Replacement Surgery Implemented in Routine Clinical Practice Study

This study will examine the effectiveness of an online, individualized patient decision aid for total knee replacement surgery to improve the quality of patient choices. The decision aid will be implemented across Alberta through the Alberta Bone and Joint Health Institute (ABJHI). This individualized decision aid is innovative in that it enables patients to consider individuals with similar characteristics, using basic demographic information (i.e., age, sex, and BMI) and a patient-reported outcome measure (PROM) (i.e., the EQ-5D), and compare the likelihood of surgical outcomes to their unique situation.

We will measure the effectiveness of the decision aid by analyzing data routinely collected by ABJHI. Measures will include the Hip and Knee Decision Quality Instrument, the Satisfaction with Decision Instrument, a patient-reported outcome measure (i.e., EQ-5D) and a patient-report experience measure (PREM).

Prior to its implementation and evaluation of its effectiveness, we are currently conducting usability testing of the individualized decision aid with patients in two phases. In Phase 1, we are examining how to better visualize and summarize information in specific areas for the decision aid, including presentation of EQ-5D data. Phase 1 data collection and analysis is well underway. In Phase 2, the usability of the entire individualized decision aid will be measured using the 10-item System Usability Scale (SUS), the Acceptability Scale, and the 10-item Preparation for Decision Making Scale (PDMS) with patients. Taken together, patient feedback from Phases 1 and 2 will be used to improve the decision aid prior to its routine implementation.

Our abstract submission to the 2023 EuroQol Plenary Meeting entitled “Patient perspectives on EQ-5D-5L data visualization within a decision aid for total knee replacement (TKA) in Alberta, Canada” was selected as discussion paper at the September 2023 meeting in Rome, Italy.

This study is co-led by Jeff Johnson from the University of Alberta (and EQ member) and Deborah Marshall from the University of Calgary. This study is planned to run for 1.5 years. We anticipate completing usability testing by fall 2024. We anticipate that the individualized decision aid will be implemented province-wide by early 2024. Aspects of this study are funded by the EuroQol Foundation and we thank them for their support.

For any questions about this project, please contact Lisa Wozniak at


APERSU End-User Meeting – October 16 & 17, 2023

We are well underway in the plans for our next APERSU End-User meeting, to be held in Calgary, October 16 & 17, 2023. We are happy to host 2 keynote speakers, Dr. Jose Valderas (National University of Singapore) and Dr. Angela Stover (University of North Carolina at Chapel Hill).

Day 1 will focus on advancing PROMs in primary care, with insights from international, national, and local approaches. We will have presentations on the OECD PaRIS initiative, the Canadian Primary Care Research Network, PROMs work in Quebec, as well as showcasing the work of Albertan End-Users.

Day 2 will focus on moving beyond implementation to the impact of PROMs and maximizing the use of PROMs data. Here we will host presentations on implementation science approaches to PROMs applications. The afternoon of day 2 will be a town hall discussion examining multiple views of PROMs implementation within the Alberta healthcare system and an exploration of challenges, successes, and future directions of utilizing PROMs data to enhance patient care and outcomes.

Specific program details and registration will be available later this August.
If you are interested in highlighting your PROMs use and giving a 3-min lightning presentation, please contact


Coming Up - APERSU EQ-5D License Follow-up

APERSU is connecting with our EQ-5D end-users to enhance our support services. We plan to follow-up with end-users who have an EQ-5D license to:
1) renew licenses (if applicable)
2) develop a repository of EQ-5D products from end-users
3) determine what tools or resources would be beneficial for end-users
4) understand end-users' confidence level in making use of EQ-5D data analytics. Watch for this in your inbox soon!

Bio image Oacia Fair

Meet the Staff - Oacia Fair, MSc

Born and raised in the United States, Oacia completed her BSc in Environmental Sustainability at Michigan State University in 2017. She was involved in participatory research in Tanzania and Nicaragua to understand food security challenges and their impact on indigenous communities. In 2021, she earned an MSc in Natural Resource Sciences from McGill University. She conducted a
case study in the Eastern Caribbean with the goal to improve child nutrition by identifying how to build a local and sustainable food procurement system in the school meals program. This community-based research project sparked Oacia’s passion for improving health outcomes through
research and using patient’s perspectives to inform healthcare.

Oacia is happy to join APERSU (since 2023) as a research coordinator. She will be supporting research on understanding PROMs use in Primary Care Networks in Alberta.


Meet the Staff - Arafat Alam, PhD

Arafat was born and raised in Bangladesh. He did his medical degree (MBBS) from Bangladesh in 2011. He later pursued a Master of Public Health in 2015 and got engaged in public health career with national and international organizations in his home country. In his previous roles, he was responsible for coordinating surveillance and routine immunization program of vaccine preventable diseases and served as a consultant for a nationwide influenza surveillance program.

Later, he developed an interest to have advanced training in health outcomes research and started graduate study in the Department of Medicine, University of Alberta in January 2019. There he explored the impact of inherited bleeding disorders and iron deficiency anemia on pregnancy outcomes using administrative databases. He graduated with his PhD in February 2023.

Arafat is happy to join the APERSU and ACHORD. In his spare time, Arafat likes to spend time with his family and friends. He is a music enthusiast and enjoys traditional cooking.


APERSU Publications

Rösel I, Serna-Higuita LM, Al Sayah F, Buchholz M, Buchholz I, Kohlmann T, Martus P, You-Shan F. What difference does multiple imputation make in longitudinal modeling of EQ-5D-5L data? Empirical analyses of simulated and observed missing data patterns. Qual Life Res 2022;31(5):1521–1532. PMID: 34797507.

APERSU Webinars/Online Forums/Presentations

Roy LM, Neill A, Swampy K, Elder Auger J, Campbell SM, Chatwood S, Al Sayah F, Johnson JA. Preference-based measures of health-related quality of life in Indigenous people: A systematic review. EuroQoL Early Career Researcher Meeting, March 7, 2023, Milan, Italy.

Wen J, Currie GR, Marshall DA, Ohinmaa A. Validation of the EQ-5D-Y-5L parent-proxy version among children with juvenile idiopathic arthritis. 3rd EuroQol Early Career Researchers Meeting, March 7, 2023, Milan, Italy.


Upcoming Events

7th APERSU End-User Meeting

October 16 and 17, 2023

Delta Calgary Downtown

209 4th Avenue SE

Calgary, AB T2G 0C6


Our Contact Information:
University of Alberta
2-040 Li Ka Shing CHRI
Edmonton, Alberta, Canada
Phone: 780-248-1010

Powered by Mad Mimi®A GoDaddy® company