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