What funders are doing to assess the impact of their investments in health and biomedical research.

As pressures to maximize research funding grow, biomedical research funders are increasingly tasked with demonstrating the long-term and real-world impacts of their funded research investments. Over the past three decades, research impact assessments (RIA) have emerged as an important tool for analysing the impacts of research by incorporating logic models, frameworks and indicators to track measures of knowledge production, capacity-building, development of research products, adoption of research into clinical guidelines and policies, and the realization of health, economic and social benefits. While there are currently several models for RIA within the literature, less attention has been paid to how funders can practically select and implement a RIA model to demonstrate the impacts of their own research portfolios. In this paper, a literature review was performed to understand (1) which research funders have performed RIAs of their research portfolios to date; (2) how funders have designed their assessments, including the models and tools they have used; (3) what challenges to and facilitators of success have funders found when adopting the RIA model to their own portfolio; and (4) who participates in the assessments. Forty-four papers from both published and grey literature were found to meet the review criteria and were examined in detail. There is a growing culture of RIA among funders, and included papers spanned a diverse set of funders from 10 countries or regions. Over half of funders (59.1%) used a framework to conduct their assessment, and a variety of methods for collecting impact data were reported. Issues of methodological rigour were observed across studies in the review, and this was related to numerous challenges funders faced in designing timely RIAs with quality impact data. Over a third of articles (36.4%) included input from stakeholders, yet only one article reported surveying patients and members of the public as part of the assessment. To advance RIA among funders, we offer several recommendations for increasing the methodological rigour of RIAs and suggestions for future research, and call for a careful reflection of the voices needed in an impact assessment to ensure that RIAs are having a meaningful impact on patients and the public.

Ethical, Legal, and Social Implications of Personalized Genomic Medicine Research: Current Literature and Suggestions for the Future.

PURPOSE: This review identifies the prominent topics in the literature pertaining to the ethical, legal, and social issues (ELSI) raised by research investigating personalized genomic medicine (PGM). METHODS: The abstracts of 953 articles extracted from scholarly databases and published during a 5-year period (2008-2012) were reviewed. A total of 299 articles met our research criteria and were organized thematically to assess the representation of ELSI issues for stakeholders, health specialties, journals, and empirical studies. RESULTS: ELSI analyses were published in both scientific and ethics journals. Investigational research comprised 45% of the literature reviewed (135 articles) and the remaining 55% (164 articles) comprised normative analyses. Traditional ELSI concerns dominated the discourse including discussions about disclosure of research results. In fact, there was a dramatic increase in the number of articles focused on the disclosure of research results and incidental findings to research participants. Few papers focused on particular disorders, the use of racial categories in research, international communities, or special populations (e.g., adolescents, elderly patients, or ethnic groups). CONCLUSION: Considering that strategies in personalized medicine increasingly target individuals' unique health conditions, environments, and ancestries, further analysis is needed on how ELSI scholarship can better serve the increasingly global, interdisciplinary, and diverse PGM research community.

Trends in International Cancer Research Investment 2006-2018.

The International Cancer Research Partnership (ICRP) is an active network of cancer research funding organizations, sharing information about funded research projects in a common database. Data are publicly available to enable the cancer research community to find potential collaborators and avoid duplication. This study presents an aggregated analysis of projects funded by 120 partner organizations and institutes in 2006-2018, to highlight trends in cancer research funding. Overall, the partners' funding for cancer research increased from $5.562 billion (bn) US dollars (USD) in 2006 to $8.511bn USD in 2018, an above-inflation increase in funding. Analysis by the main research focus of projects using Common Scientific Outline categories showed that Treatment was the largest investment category in 2018, followed by Early Detection, Diagnosis, and Prognosis; Cancer Biology; Etiology; Control, Survivorship, and Outcomes; and Prevention. Over the 13 years covered by this analysis, research funding into Treatment and Early Detection, Diagnosis, and Prognosis had increased in terms of absolute investment and as a proportion of the portfolio. Research funding in Cancer Biology and Etiology declined as a percentage of the portfolio, and funding for Prevention and Control, Survivorship and Outcomes remained static. In terms of cancer site-specific research, funding for breast cancer and colorectal cancer had increased in absolute terms but declined as a percentage of the portfolio. By contrast, investment for brain cancer, lung cancer, leukemia, melanoma, and pancreatic cancer increased both in absolute terms and as a percentage of the portfolio.

Landscape of Global Oncology Research and Training at National Cancer Institute-Designated Cancer Centers: Results of the 2018 to 2019 Global Oncology Survey.

PURPOSE: The National Cancer Institute (NCI)-Designated Cancer Centers (NDCCs) are active in global oncology research and training, leading collaborations to support global cancer control. To better understand global oncology activities led by NDCCs, the NCI Center for Global Health collaborated with ASCO to conduct the 2018/2019 NCI/ASCO Global Oncology Survey of NDCCs. METHODS: Seventy NDCCs received a two-part survey that focused on global oncology programs at NDCCs and non-National Institutes of Health (NIH)-funded global oncology projects with an international collaborator led by the NDCCs. Sixty-seven NDCCs responded to the survey. Data were coded and analyzed by NCI-Center for Global Health staff. RESULTS: Thirty-three NDCCs (47%) reported having a global oncology program, and 61 (87%) reported a collective total of 613 non-NIH-funded global oncology projects. Of the NDCCs with global oncology programs, 17 reported that trainees completed rotations outside the United States and the same number enrolled trainees from low- and middle-income countries (LMIC). Primary focus areas of non-NIH-funded projects were research (469 [76.5%]) and capacity building or training (197 [32.1%]). Projects included collaborators from 110 countries; 68 of these were LMIC. CONCLUSION: This survey shows that there is a substantial amount of global oncology research and training conducted by NDCCs and that much of this is happening in LMIC. Trends in these data reflect those in recent literature: The field of global oncology is growing, advancing scientific knowledge, contributing to building research and training capacity in LMIC, and becoming a recognized career path. Results of the 2018 Global Oncology Survey can be used to foster opportunities for NDCCs to work collaboratively on activities and to share their findings with relevant stakeholders in their LMIC collaborator countries.