Expanding the Role of Patients as Stakeholders in Biobanking

In an earlier post, we looked into the role of patients as active participants in biobank setup and management. The papers reviewed showed that, especially for disease-specific biobanks, close collaboration with donors representative of an at-risk population was key to increasing biosample acquisition. Mitchell et al. (2015) review this area further, giving evidence of disease-specific biobanks that are running successfully under close patient involvement and governance and could be useful resources to professionals in this area.¹

Historically, the role of patients in biobank management has been passive; however, this is changing to more active participation as health care design and delivery adapts to changes in clinical medicine. As Mitchell et al. note, the rise in personalized medicine has increased the importance of biobanking for research, and as such, there is greater patient and public involvement (PPI). The role of the donor is changing from supplier to collaborator. Moreover, with this change in role, biobanking administrators are seeing the importance and value of consulting these new stakeholders on design, implementation, management and other issues to increase success.

Mitchell and coauthors suggest that this move toward viewing patients/donors as collaborators should not be a surprise, since it exists in the context of health care design overall moving into greater consideration of user experience.

According to their review, patient involvement in biobanking affects four main areas:

Patient initiative
Many disease-specific biobanks, especially those with a focus on rare conditions, develop due to initiatives from the patients and their caregivers themselves. In these cases, patient support groups form a close and engaged community. Two of the biobanks mentioned as examples by Mitchell and colleagues, the Chordoma Foundation (United States) and the I.B.AHC pediatric hemiplegia biobank (Italian Biobank for Alternating Hemiplegia of Childhood), fit in this category.

The Chordoma Foundation board comprises patients and family members who oversee a centralized biosample resource. The foundation develops tissue sample collection kits for consistency in harvesting and recovery prior to storage. With the rarity of the disease, the foundation is considering localized storage options, expanding into Europe and maintaining research access through a centralized data repository.

The I.B.AHC is run by its associated patient association and provides a centralized repository for both clinical data and patient DNA samples. In addition to advocating for the patients, their association drives recruitment to the biobank and develops consent procedures for donation.

Patient position within the biobanking hierarchy

In addition to stakeholder input, some biobanks rely on patients/donors in governance of the biorepository. For example, patients, donors and family caregivers hold positions within governance hierarchies in the Wales Cancer Bank (United Kingdom) and Mayo Clinic Biobank (US). These positions offer stakeholder input into regulatory oversight for the biobanks. Furthermore, ongoing user input at the Nottingham Health Science Biobank (UK) contributes to maintaining relationships with donors that ensure continued biorepository success.

Patient opinion and input

Biobanks are finding that patient/donor opinion can help with ELSI (ethical, legal and social issues) matters such as consent, re-consent and other management concerns. For example, the Wales Cancer Bank has patient representatives on its Lay Liaison and Ethics group who oversees operation and review research requests from a donor perspective.

Education and training for biobanking professionals
Through patient-led initiatives and as patient advocates, donors and caregivers are involved in training biobank clinicians and staff. This can influence issues such as recruiting and following up with donors. Experienced advocates all with personal experience of breast cancer now lead the consent process in biosample collection clinics for the Nottingham Health Science Biobank.

Describing it as a “cultural revolution” in health care, Mitchell et al. suggest that increasing stakeholder collaboration through PPI benefits biobanking by improving donor retention and recruitment of research interests, thus increasing the biobank’s value.

Reference

1. Mitchell, D. et al. (2015) “Biobanking from the patient perspective,” Research Involvement and Engagement, 1(4), doi: 10.1186/s40900-015-0001-z