Published on in Vol 11 (2024)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/48359, first published .
Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study

Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study

Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study

Martijn R Brands   1, 2 , MD ;   Lotte Haverman   2, 3 , PhD ;   Jelmer J Muis   2, 3 , MSc ;   Mariëtte H E Driessens   4 , PhD ;   Stephan Meijer   4 , MSc ;   Felix J M van der Meer   5, 6 , MD, PhD ;   Marianne de Jong   7 , MSc ;   Johanna G van der Bom   8 , MD, PhD, Prof Dr ;   Marjon H Cnossen   9 , MD, PhD ;   Karin Fijnvandraat   1, 2, 10 , MD, PhD, Prof Dr ;   Samantha C Gouw   1, 2, 8 , MD, PhD

1 Department of Pediatric Hematology, Emma Children’s Hospital, Amsterdam UMC location University of Amsterdam, Amsterdam, Netherlands

2 Amsterdam Reproduction & Development, Public Health, Amsterdam UMC location University of Amsterdam, Amsterdam, Netherlands

3 Child and Adolescent Psychiatry & Psychological Care, Emma Children’s Hospital, Amsterdam UMC location University of Amsterdam, Amsterdam, Netherlands

4 Netherlands Hemophilia Patient Society, Nijkerk, Netherlands

5 HemoNED Foundation, Leiden, Netherlands

6 Department of Thrombosis and Hemostasis, Leiden University Medical Center, Leiden University, Leiden, Netherlands

7 Independent patient representative, Utrecht, Netherlands

8 Department of Clinical Epidemiology, Leiden University Medical Center, Leiden University, Leiden, Netherlands

9 Department of Pediatric Hematology and Oncology, Sophia Children’s Hospital, Erasmus Medical Center, Rotterdam, Netherlands

10 Department of Molecular Cellular Hemostasis, Sanquin Research and Landsteiner Laboratory, Amsterdam, Netherlands

Corresponding Author:

  • Samantha C Gouw, MD, PhD
  • Department of Pediatric Hematology, Emma Children’s Hospital
  • Amsterdam UMC location University of Amsterdam
  • Meibergdreef 9
  • Amsterdam, 1105 AZ
  • Netherlands
  • Phone: 31 020 566 2727
  • Email: s.c.gouw@amsterdamumc.nl