TY - JOUR
T1 - Learning from every patient
T2 - the 'outpatient innovation clinic'
AU - Kamphuis, Maarten J
AU - van der Schaaf, Irene C
AU - Gal, Roxanne
AU - van der Velden, Joanne M
AU - Burbach, J P Maarten
AU - Kasperts, Nicolien
AU - van der Voort van Zyp, Jochem R N
AU - Verhoeff, Joost J C
AU - Young-Afat, Danny A
AU - Intven, Martijn P W
AU - Gernaat, Sofie A M
AU - van der Baan, Frederieke H
AU - Vink, Geraldine R
AU - Koopman, Miriam
AU - Raaijmakers, Faye J
AU - Cialdella, Fia
AU - Lalmahomed, Tariq A
AU - Westerhoff, Jasmijn M
AU - Hovenier, Renée
AU - Huele, Eline H
AU - Teunissen, Frederik R
AU - Mink van der Molen, Dieuwke R
AU - de Mol van Otterloo, Sophie R
AU - Hattink, Merle
AU - Tomassen, Mathijs L
AU - Daamen, Lois A
AU - Verkooijen, Helena M
N1 - Publisher Copyright:
© 2026 The Authors.
PY - 2026/3/23
Y1 - 2026/3/23
N2 - Objectives To keep pace with rapid medical innovation, health care must be organized to enable systematic learning from every patient. The ‘outpatient innovation clinic’ was established to support this goal. This paper presents 12 years of experience with the outpatient innovation clinic, highlighting its approach, achievements, and challenges. Methods Established in 2013 at the Division of Imaging and Oncology at University Medical Center Utrecht, the Netherlands, the outpatient innovation clinic provides an infrastructure to systematically enroll patients into prospective cohort studies. Patients are invited for a consultation with a clinical researcher, and informed consent is asked for the reuse of medical data, the collection of patient-reported outcome measures (PROMs), randomization into trials, biobanking, and recontact. The infrastructure serves as a platform for evidence-based innovation, following the idea, development, exploration, assessment, and long-term evaluation (IDEAL) framework. Results Between 2013 and 2025, eight prospective (international) multicenter observational cohorts of patients with primary tumors, metastatic cancer, or neurovascular malformations were established. Out of a total of 45,099 participants, 15,691 were enrolled at the innovation clinic. Of these, 13,172 (84%) provided additional informed consent for the collection of PROMs, and 11,833 (79%) for randomization into future trials within cohorts, either to serve as controls or to receive an invitation for participation. A large real-world data repository was generated and is used for technical product development and testing, hypothesis-generating studies, training and evaluation of (deep learning) algorithms, long-term PROMs analysis, and randomized treatment comparisons. Since 2014, five cohort-embedded trials have been completed, four are ongoing, and one is in preparation. Conclusion The outpatient innovation clinic offers a successful infrastructure for (deep) learning from every patient and for evaluating medical innovations within the IDEAL framework, while safeguarding patients’ autonomy over the reuse of their medical data.
AB - Objectives To keep pace with rapid medical innovation, health care must be organized to enable systematic learning from every patient. The ‘outpatient innovation clinic’ was established to support this goal. This paper presents 12 years of experience with the outpatient innovation clinic, highlighting its approach, achievements, and challenges. Methods Established in 2013 at the Division of Imaging and Oncology at University Medical Center Utrecht, the Netherlands, the outpatient innovation clinic provides an infrastructure to systematically enroll patients into prospective cohort studies. Patients are invited for a consultation with a clinical researcher, and informed consent is asked for the reuse of medical data, the collection of patient-reported outcome measures (PROMs), randomization into trials, biobanking, and recontact. The infrastructure serves as a platform for evidence-based innovation, following the idea, development, exploration, assessment, and long-term evaluation (IDEAL) framework. Results Between 2013 and 2025, eight prospective (international) multicenter observational cohorts of patients with primary tumors, metastatic cancer, or neurovascular malformations were established. Out of a total of 45,099 participants, 15,691 were enrolled at the innovation clinic. Of these, 13,172 (84%) provided additional informed consent for the collection of PROMs, and 11,833 (79%) for randomization into future trials within cohorts, either to serve as controls or to receive an invitation for participation. A large real-world data repository was generated and is used for technical product development and testing, hypothesis-generating studies, training and evaluation of (deep learning) algorithms, long-term PROMs analysis, and randomized treatment comparisons. Since 2014, five cohort-embedded trials have been completed, four are ongoing, and one is in preparation. Conclusion The outpatient innovation clinic offers a successful infrastructure for (deep) learning from every patient and for evaluating medical innovations within the IDEAL framework, while safeguarding patients’ autonomy over the reuse of their medical data.
KW - Cohort studies
KW - Patient reported outcome measures
KW - Pragmatic clinical trials as topic
KW - Prospective studies
KW - Quality of life
KW - Registries
KW - Routinelycollected health data
U2 - 10.1016/j.jclinepi.2026.112250
DO - 10.1016/j.jclinepi.2026.112250
M3 - Article
C2 - 41881201
SN - 0895-4356
VL - 195
JO - Journal of Clinical Epidemiology
JF - Journal of Clinical Epidemiology
M1 - 112250
ER -