Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action.

This article examines biobank transparency mechanisms vis-à-vis their public information, as found on the public biobank webpages. Two independent studies about biobank governance in Europe and Canada identified a lack of governance-related information provided by biobanks on their public webpages. This lack of transparency stands in contrast to governance best practice guidelines highlighting the importance of transparency as a principle of good governance.

Case Study: Innovation Procurement for a Patient and Caregiver Support Solution in the Home.

This case describes an innovation partnership procurement strategy by a community care health organization to procure a digital solution able to support both caregivers and older adults receiving homecare services. Vendor submissions proposed both existing technologies and new solutions that were challenging to evaluate. An existing technology was procured and first pilot tested in a laboratory setting prior to a field trial with seniors and their caregivers in the home.

Case Study: Innovation Procurement for a "Smart" Privacy Solution.

This case describes an initiative to procure a "smart" privacy solution with machine learning capabilities that could eliminate false-positive alerts of privacy risks for an Ontario hospital. A competitive dialogue procurement strategy proceeded over a two-year period and involved two stages of competitive dialogue and a pilot phase to test the procured privacy solution. Discussions and sharing feedback on solutions with vendors, followed by dialogue on solution pricing and service offerings, resulted in a vendor contract that allowed other hospitals to benefit from the established agreement.

Case Study: Innovation Procurement for a Digital Services Platform.

This case describes a design contest strategy to procure a solution to coordination of care transitions across healthcare programs to strengthen patient outcomes. The fit of the vendors' approach with the organization and the potential for building a strong relationship with the vendor teams were evaluated. A consortium of small Canadian companies was selected to proceed to a proof-of-concept phase and full implementation of the digital solution across the region.

Case Study: Innovation Procurement for a Cardiac Program.

This case describes a competitive dialogue strategy to procure a cardiac program solution to strengthen performance, outcomes and value in an Ontario hospital. All major contracts for the cardiac program were expiring, offering a unique opportunity for procurement of innovation. Procurement was completed in two phases, with an additional request for proposals issued for the unique specialty products not included in the initial procurement.

Innovation Procurement in Health Systems: Exploring Practice and Lessons Learned.

As rising healthcare costs continue to challenge the sustainability of global health systems, there has been a strategic shift toward a focus on value, which considers the outcomes and value of healthcare delivery relative to the costs of care delivery. A unique feature of this focus on value has influenced a shift in procurement whereby health organizations are advancing the procurement of innovative solutions to achieve defined outcomes that overcome challenges such as the quality, safety and cost of care delivery. In this paper, we report on the implementation of three innovation procurement models in four Ontario healthcare organizations.

The institutional workers of biomedical science: Legitimizing academic entrepreneurship and obscuring conflicts of interest.

Given growing initiatives incentivizing academic researchers to engage in 'entrepreneurial' activities, this article examines how these academic entrepreneurs claim value in their entrepreneurial engagements, and navigate concerns related to conflicts of interest. Using data from qualitative interviews with twenty-four academic entrepreneurs in Canada, we show how these scientists value entrepreneurial activities for providing financial and intellectual resources to academic science, as well as for their potential to create impact through translation. Simultaneously, these scientists claimed to maintain academic norms of disinterested science and avoid conflicts of interest.

Transparency of Biobank Access in Canada: An Assessment of Industry Access and the Availability of Information on Access Policies and Resulting Research.

A key issue impacting public trust in biobanks is how these resources are utilized, including who is given access to biobank data and samples. To assess the conditions under which researchers are given access to Canadian biobanks, we reviewed websites and contacted Canadian biobanks to determine the availability of information on access policies and procedures; research resulting from access biobank data and samples; and conditions on private industry access to biobanks. We also conducted expert interviews with key Canadian stakeholders ( n = 11) to obtain their perspectives on biobank transparency and access policies.

PUBLIC AND PATIENT INVOLVEMENT IN HEALTH TECHNOLOGY ASSESSMENT: A FRAMEWORK FOR ACTION.

Objective: As health technology assessment (HTA) organizations in Canada and around the world seek to involve the public and patients in their activities, frameworks to guide decisions about whom to involve, through which mechanisms, and at what stages of the HTA process have been lacking. The aim of this study was to describe the development and outputs of a comprehensive framework for involving the public and patients in a government agency's HTA process.

Methods: The framework was informed by a synthesis of international practice and published literature, a dialogue with local, national and international stakeholders, and the deliberations of a government agency's public engagement subcommittee in Ontario, Canada.

Towards a bioethics of innovation.

In recent years, it has become almost axiomatic that biomedical research and clinical practice should be 'innovative'-that is, that they should be always evolving and directed towards the production, translation and implementation of new technologies and practices. While this drive towards innovation in biomedicine might be beneficial, it also raises serious moral, legal, economic and sociopolitical questions that require further scrutiny. In this article, we argue that biomedical innovation needs to be accompanied by a dedicated 'bioethics of innovation' that attends systematically to the goals, process and outcomes of biomedical innovation as objects of critical inquiry.

Citizen expectations of 'academic entrepreneurship' in health research: public science, practical benefit.

Background: Responsiveness to citizens as users of technological innovation helps motivate translational research and commercial engagement among academics. Yet, retaining citizen trust and support for research encourages caution in pursuit of commercial science.

Objectives: We explore citizen expectations of the specifically academic nature of commercial science [i.

Do canadian researchers and the lay public prioritize biomedical research outcomes equally? A choice experiment.

Purpose: To quantify and compare the preferences of researchers and laypeople in Canada regarding the outcomes of basic biomedical research.

Method: In autumn 2010, the authors conducted a cross-sectional, national survey of basic biomedical researchers funded by Canada's national health research agency and a representative sample of Canadian citizens to assess preferences for research outcomes across five attributes using a discrete choice experiment. Attributes included advancing scientific knowledge (assessed by published papers); building research capacity (assessed by trainees); informing decisions in the health products industry (assessed by patents); targeting economic, health, or scientific priorities; and cost.

Expectations and values about expanded newborn screening: a public engagement study.

Objectives: Newborn bloodspot screening (NBS) panels have expanded to include conditions for which treatment effects are less certain, creating debate about population-based screening criteria. We investigated Canadian public expectations and values regarding the types of conditions that should be included in NBS and whether parents should provide consent.

Methods: Eight focus groups (FG; n = 60) included education, deliberative discussion and pre-/post-questionnaires.

Citizens' values regarding research with stored samples from newborn screening in Canada.

Objectives: Newborn screening (NBS) programs may store bloodspot samples and use them for secondary purposes. Recent public controversies and lawsuits over storage and secondary uses underscore the need to engage the public on these issues. We explored Canadian values regarding storage and use of NBS samples for various purposes and the forms of parental choice for anonymous research with NBS samples.

Cancer as rubbish: donation of tumor tissue for research.

Tissue banking (or biobanking), thought by many to be an essential form of medical research, has raised a number of ethical issues that highlight a need to understand the beliefs and values of tissue donors, including the motivations underlying consent or refusal to donate. Data from our qualitative study of the legal, social, and ethical issues surrounding tumor banking in New South Wales, Australia, show that participants' attitudes to donation of tumor tissue for research are partially captured by theories of weak altruism and social exchange. However, we argue that the psychological rewards of value transformation described by Thompson's rubbish theory provide additional insights into participants' attitudes to tumor donation.

Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research.

Little is known about why patients with cancer do or do not donate their biopsied/cancerous tissue to research. A review of the literature on motivations to participate in clinical research and to donate tissues/organs for therapeutic use may provide some insights relevant to tumour banking research. While more research is necessary, a better understanding of the factors that motivate patients to give or refuse consent to tumour banking may ultimately improve consent practices, public trust and donation rates.