KEY4OI UPDATE: 24 SEPTEMBER (DUTCH)
DEELNEMERS GEZOCHT VOOR PROJECT ROND GEHOOR, TANDEN/KAAK, LONG EN HART & VAAT
Heeft u belangstelling voor goede zorg en onderzoek rond de boven genoemde 4 onderwerpen? Dan hopen wij dat u mee wilt doen aan virtuele focus groepen voor het project “Key4OI Plus”.
De focus groepen worden internationaal gehouden en zijn voor mensen van 18 jaar en ouder (16-18 jaar met toestemming van de ouders). Een omschrijving van het project is de vinden op deze slides en deze video. Het project wordt gecoördineerd door Stichting Care4BrittleBones. De VOI werkt samen met de Expertisecentra mee aan de implementatie van Key4OI in Nederland.
Opgeven of vragen graag voor 1 oktober bij:
Wat zoeken wij:
- Zo veel mogelijk mensen uit NL en de hele wereld
- Ervaring met Gehoor, gebit & kaak, hart en long
- In staat om niet alleen vanuit jezelf te spreken. Brede radar.
- Onderzoek en verbetering van de zorg voor OI belangrijk voor je
- Tijd en zin! Oktober – Februari. Max 5 meetings. 2 dagen tijd. Geen compensatie.
- Goed in het Engels
- In staat om met zoom te werken (videoconferenties)
Wat kunt u zelf verwachten:
- U maakt deel uit van een belangrijk wereldwijd onderzoeksproject voor Kwaliteit van leven voor OI
- U ondersteunt dat onderzoekers mensen met OI beter kunnen helpen
- Super leuke internationale ervaring – met andere mensen met OI rond de wereld.
- Optie om meer te betekenen en met artsen “om tafel te zitten” als partners
KEY4OI UPDATE: 9 SEPTEMBER
Very soon our next quarterly videoconference call is coming up in which we will be updating you about the Key4OI Journey. Key4OI is a core set of outcome measures for clinical care and research. Check out this video for more information. > 200 people from the OI Community and the healthcare institutions below have participated in generating Key4OI together in 2018 and 2019. Their logos are displayed on the picture below! What a unique alliance!
Focus of the upcoming call:
- an update from the 6 pilot locations (Montreal, Delaware China, Norway, Denmark and NL – Isala and Utrecht UMC).
- an introduction to Key4OI Plus (see image) with an opportunity for Q&A.
9 September, 4-5.30 pm CET
ZOOM link: https://zoom.us/j/681644049
CALL FOR ACTION: KEY4OI PLUS – JOIN THE PROJECT!
The Core Outcome set of Key4OI is recommending a minimum standard of clinical care for people with OI, all ages, all types of OI everywhere around the world. What it does not do is to cover “everything” people with OI need. In creating the Key4OI set we constantly challenged ourselve to keep things fit for purpose as we really want to implement these standards. People with OI in the 6 pilot locations should actually start to experience it first hand starting 2021 at the latest. Really exciting.
With Key4OI PLUS, we now want to bring things to the next level, and develop a supplementary set of outcome measures for the 4 areas that are of very high importance for a significant number of people:
- Teeth & Jaw
- Pulmonary Function
- Cardiovascular Function
If you want to get engaged in virtual focus groups or workshops, let us know using the button below and we will invite you into the kick-off calls where we will explain the options to participate.
We are expecially looking for:
- Adults with OI who have personal experiences with one of the 4 topics (all types of OI)
- Healthcare providers with expertise in these 4 areas in relation to OI.
Work has been delivered & the project is ongoing
Project team: W. Nijhuis, A. Franken, G. Janus, R. Sakkers, M. Verhoef
Expert team: K. Ayers, Ch. Damas, L. Folkestad, A. Forlino, P. Fraschini, C. Hill, R. Kruse, L. Lande-Wekre, L. Michiels, K. Montpetit, L. Panzeri (S. Paveri), F. Rauch, JP Salles (V. Porquet-Bordes), O. Semler, J. Sun, M. To (Eric Yeung), L. Tosi, L. Zhytnik, C. Zillikens,
Project management: Dagmar Mekking, CEO Care4BrittleBones
Care for the patient with Osteogenesis Imperfecta is complex.
There is a critical need to better define the outcomes particularly those that matter most to patients and their families and to standardize the methods by which these outcomes will be measured.
The underlying research questions for project Key4OI are: “What outcomes should the a multidisciplinary OI team track at each stage of treatment, reﬂecting what matters most to people with OI throughout their lifetime? How could this data be collected, evaluated and compared taking into account both patient reported outcome measures and clinically reported outcome measures to drive sustainable insights for healthcare improvement and research into OI?”
The primary objective was to reach multidisciplinary and international consensus for a standard set of outcomes in OI care and research. To ensure the outcome set is relevant and reflects the view of people with OI, they were involved in all stages of the process. The standard set had to be comprehensive enough to cover all main aspects of OI relevant for treatment and research, yet practical enough for sustainable implementation. This would allow teams around the world to measure their own performance in a consistent fashion.
In November 2019, the Key4OI Core Outcome set has been agreed. It summarizes the recommendations of an international, multidisciplinary working group, based on input from 16 focus groups held around the world. Each Focus group was based on a detailed script and took several hours.
The Key4OI Set has been presented during the Conference Quality of Life 4 OI
Plans for 2020:
- Piloting Key4OI
6 hospitals / countries are setting up to pilot Key4OI in their center(s) and are meeting every 2 weeks to progress critical issues as much as possible together:
(1) Shriners Hospital for children Montreal, Canada,
(2) Alfred I duPont Children’s Hospital, Delaware USA
(4) China / HongKong
(6) NL (Isala, Utrecht MC, others to be discussed)
- Engaging with the Key4OI – Affiliate group
11 other countries have expressed interest to work with Key4OI in the future: Brazil, Israel, Russia, Switzerland, India, UK, Italy, Belgium, France, Germany, Estonia. They are forming the Key4OI Affiliates Group and are kept informed in quarterly teleconferences (5 February, 6 May, 9 September, 9 December 2020). If you would like to join this group, please send an e-mail to firstname.lastname@example.org
- Presentation OI Sheffield
We will provide an update on Key4OI during a presentation at OI-Sheffield.
Plans longer term
All funding supporting Key4OI has been generated through the OI community and through the generous work of hundreds of hours of many Key4OI experts and people in the project team (see above). Foundation Care4BrittleBones has been requested to manage the further development of the Key4OI set. The foundation is committed to provide resources to fund future work and provide a platform for learning & development related to Key4OI.
No industry funding has been received. We are currently reviewing the option to use the Key4OI set in the process of clinical trials through the EMA qualification process.
We hope eventually to create a FAIR data environment in which Key4OI data can be aggregated on an anonymous basis to support healthcare improvement and reseach into OI. This is expected to take 3-5 years.
Any questions can be directed to Care4BrittleBones (email@example.com)
For the last 1,5 years experts from many different countries have been working together in Project “Key4OI”. The aim of this project is to develop a core outcome set for OI, children and adults. The focus is on: Outcomes that are relevant for most people with OI, worldwide, througout a life time.
Outcomes that would support routine clinical practice and research and therefore a good health related Quality of Life for people with OI! Input was provided through 16 (!) OI focus group, usually supported by their local patient organisation as well as an expert. We are very thankful to Belgium (ZOI), Canada, Chili (FOICH), France (AOI), Germany (DOIG), HongKong/China (O1 local group supported by China Dolls Association), Italy (ASITOI), the Netherlands (VOI), Russia (Fragile People Fund), UK and USA (OIF) for their fantastic work!! The big question is: Was there sufficient agreement between the groups? Is is even possible to create a core outcome set for a disorder as divers as OI?
Soon this page will be completed with all relevant information regarding Key4OI