Donor interaction

The book The Donor as Partner provides guidelines for biobanks, registries and researchers to help set up a participation strategy suited to their specific situation. It gives insights into why and how to involve donors, and conditions that contribute to sustainable embedding of participation initiatives.

What is BBMRI-NL’s The Donor as Partner book?

In November 2014, the book The Donor as Partner was distributed among biobanking coordinators and patient advocacy groups. The book sums up the methods and levels of patient participation in the governance of biobanks and serves as a guideline for biobanks and participants alike to find the most appropriate model of participation for their specific situation. The book is available in English and Dutch.

Central questions in the book are: what specific research is facilitated by the collection of datasets? How are donors recruited? And how will biospecimens and data be managed? The book not only focusses on participation in biobanks and biobank research, but also touches on topics like developing a positive relationship between biobanks and patients, donors and the public, and the ethical and societal aspects of research.

Why BBMRI-NL’s The Donor as Partner book?

Through a questionnaire and interviews with biobank coordinators in 2012 and 2013, project leaders within BBMRI discovered that, although there are some initiatives to involve donors in biobanks, participation was a relatively scarce phenomenon, and biobank coordinators were unsure about the best ways in which to include participation in their situations. By developing this book with guidelines, biobank coordinators and donors alike can now determine the best model to use in their specific situation.

Intended users

The book is intended for biobanking coordinators and patient advocacy groups to help them find the right model for patient participation for their specific situation.

Using BBMRI-NL’s The Donor as Partner book

The book describes why donor participation is important, how this participation can be realized, and which conditions contribute to a sustainable embedding of participation initiatives. It then highlights participation strategies for different types of biobanks complemented by concrete examples. Each section provides recommendations for biobanks, registries and researchers to help set up their own participation strategy.

The book can be downloaded in English and Dutch.

Additional information

The book was one of the deliverables of the BBMRI-NL Rainbow project 6, “Towards a joint strategy for the return of results and optimal communication with biobank donors”.

A paper version of the book can be ordered by sending an email to info@bbmri.nl