Rethinking biobanking and translational medicine in the Netherlands: how the research process stands to matter for patient care

Abstract

Biobanking has been identified as one of the key components of translational medicine, and while current models for translation tend to focus their attention on how the products of research projects are fed back into health-care practices, we suggest that in addition to that the research process itself can have beneficial effects on the delivery of high-quality health care by streamlining diagnostic and follow-up protocols, reduced patient waiting times, and facilitating data comparison across patients. This Viewpoint is based on experiences with, and observations of, the neurodegenerative component of a clinical biobanking initiative in the Netherlands called the Parelsnoer Institute (PSI), which links all eight of the University Medical Centers for harmonized and standardized collection and storage processes for multiple disease conditions.

Raising to the Challenge: Building a Federated Biobank to Accelerate Translational Research—The University Biobank Limburg

“…Each CMI affiliate collected samples according to agreed harmonized quality guidelines and procedures within the CMI network, while samples remained under control of the collecting institution. This approach was similar to the Dutch String of Pearls Initiative, which has proven to be a successful method in addressing translational research challenges (30, 31). With Hasselt University/UBiLim not acknowledged as a full-blown center within the CMI project, only partial funding could be obtained for operational activities and participation in the development of the centralized catalog.…”

Patients to learn from: on the need for systematic integration of research and care in academic health care

“…Such harmonization, and the ongoing process of tinkering and reflection on what data to collect in what ways, facilitates collective learning and stimulates the wider adoption of clinical best practice. In this way, patient care stands to become enhanced by research processes themselvesnot just by the outcomes of research [7].…”

“…The establishment of these novel routines and infrastructures has led to rapid improvements in patient care throughout participating institutions, by stimulating inter-institutional comparison and learning processes for all kind of aspects of clinical procedures, by driving the uptake and diffusion of clinical best practice, as well as by facilitating ongoing comparison and improvement of clinical outcomes. A tangible outcome of such improved care is evidenced by the fact that the diagnostic protocol for PSI is still widely used in most UMCs by participating clinicians [7,8].…”

“…The need for real-world relevance of research in countering problems of research waste also merits a more systematic approach to involvement, monitoring and data collection of patients [28]. The experiences in the Parelsnoer Institute suggest that such infrastructures may at the same time provide a more efficient platform for translational research as well [7]. Moreover, involvement of patient advocates and organizations could become a standard feature of the research agenda-setting process, protocol design and execution.…”

Business Planning in Biobanking: How to Implement a Tool for Sustainability

“…T he economic and social importance of biobanking is growing due to the rapid acceleration of biotechnology 1 and to the parallel augmented impact of human samples in translational medicine. 2–4 Notwithstanding the increasing interest of public and private sectors, a major unresolved question is still the economic sustainability of both individual collections and of biobanking complex infrastructures, 5 , 6 of which the main products are the human samples that are not commercial goods. 7 Thus, the development of economically sustainable models for biobanking is a matter of debate, and different models of economic revenues based on different cost recovery processes have been proposed.…”