Empowering Voices in Core Outcome Set Development in Rheumatology
Ingrid de Groot
Ingrid de Groot (The Netherlands, 1970) was working fulltime as a counsellor/ social worker for child protection services, when dermatomyositis, diagnosed in 2007 eventually ended her professional career in 2015. She then decided to dedicate her time and energy on patient advocacy and patient work. She chairs the myositis working group of Spierziekten Nederland (Dutch patient association for neuromuscular disease). But since myositis is both a neuromuscular and a rheumatic disorder, one of her aims is to bring those worlds together in research, care but also in patient work.
Being invited to join the OMERACT (Outcome Measures in Rheumatology) Myositis Working Group in 2018 was therefore an opportunity too good to be true and only 4 months later Ingrid experienced firsthand what the Spirit of OMERACT means when visiting her first bi-annual meeting in Whistler, Canada. Being part of the first group ever to study worldwide which aspects of this very rare disease matters most to patients, is still something she is both grateful for and an incentive to get involved in more projects on national and international level. Ingrid decided her luck as 1stauthor and a Patient Research Partner to write an article on their OMERACT myositis study, which was published in the Dutch Journal of Rheumatology. A confirmation that the work their OMERACT-SIG is doing is not only of high standard, but also worth talking about!
In these last years Ingrid got involved in projects and organisations like ReumaZorg Nederland (Dutch patient association for rheumatic disorders), EULAR ( Patient Research Partner and member of the studygroup for collaborative research) and she is member of a patient board which evaluates grant applications for research in neuromuscular disease for Prinses Beatrix Spierfonds. She participated in several ENMC workshops on myositis for which she wrote lay summaries.
In 2019 she joined European Reference Network (ERN) Muscle Diseases working group as a patient representative. Recently she has been assisting patients in other countries to establish their own myositis working groups. In 2020 she joined the IMACS (International Myositis Assessment and Clinical Studies Group) Myositis Exercise and Rehabilitation steering group, which is now studying the effects and safety of exercise in all types of myositis with the goal to develop consensus guidelines on exercise for adult and juvenile myositis patients.
In 2020 Ingrid participated in OMERACT2020 in Terrigal, Australia. She is proud and grateful to be part of the OMERACT PRP Support Team and hopes our highly motivated team will encourage other patients to get involved and make a difference in the research and care of rheumatic disorders. Research and care cannot improve without the experiential knowledge of those living with it every day!
Ingrid lives in Rotterdam, The Netherlands with her husband.