NIH’s RFI on Proposed Provisions for a Future Draft Data Management and Sharing Policy

Document | Webinar

The NIH is soliciting public input on proposed key provisions that could serve as the foundation for a future NIH policy for data management and sharing.  Comments using the process described in the document above will be accepted until December 10, 2018. The American Heart Association has drafted a very…

FIRST Group Update [HRA Members Meeting, Fall 2018]


This session will provide context for and discuss recent activities aimed at building effective working relationships between funders and universities. We will report on topics addressed at both the May 16th and November 7th Nonprofit Funder – Research Institution Partnership Workshops. We will discuss next steps for the effort in…

Measuring Funding Impact Through Grantee Outputs [HRA Members Meeting, Fall 2018]


Measuring the impact of a non-profit organization’s grants program can be a difficult, and sometimes ambiguous, process. For example, answering a seemingly simple question like, “how successful are we at accomplishing our mission?”, typically results in more questions than definitive or tangible answers.  One approach to gauging organizational success is…

Stronger Together: How Collaboration Can Lead to Greater Impact [HRA Members Meeting, Fall 2018]


Collaboration is often the key to scientific success, bringing together individuals with different expertise and skills to advance the field. This type of teamwork can also elevate and improve the efforts of biomedical research grant makers, bringing organizations together toward a common mission. This session will begin with an introduction…

Implementing New Ways to Model Human Disease for More Effective Drug Discovery [HRA Members Meeting, Fall 2018]


The cost of drug R&D makes up the bulk of the cost of prescription drugs because consumers not only pay for the medicines they are prescribed, but also for all the ostensibly promising agents emerging for the laboratory only to fail in clinical trials. The preclinical drug discovery and testing…

Peer Review Under the Microscope: From Best Practices to Current Challenges [HRA Members Meeting, Fall 2018]


Scientific peer review has long been the gold standard for evaluating grant applications, but different organizations implement peer review in different ways. In addition, issues like unconscious bias and data reproducibility has brought these processes under greater scrutiny. This session will focus on peer review best practices that are informed…

NFRI Workshop [November 7, 2018]


The Nonprofit Funder -Research Institution (NFRI) partnership hosted its second workshop to advance discussions on IP and technology transfer, reimbursement of research operating costs and how to streamline administrative requirements. Like the first meeting, the second meeting was also supported by the National Academies of Sciences, Engineering and Medicine’s (NASEM)…

HRA Regional Meeting: Metro DC [October 16, 2018]


The theme of the October 2018 Regional Members Meeting (hosted by HHMI) was Diversity and Inclusion.  After an active networking breakfast, Dr, Hannah Valantine, NIH’s first Chief Officer for Scientific Workforce Diversity, kicked off the meeting.  Dr. Valantine presented compelling data as to why diversity matters.  For instance, her data…

Shared Member Documents

Click on the category of shared member documents above you are interested in accessing.  If you have other categories of documents you would like HRA to collect please let Annette know.   Also, if you would like to submit your organization’s documents or update the one we have listed for…

Intro to Datavant: Technology to link patient-level healthcare data without sharing personally-identifiable information [Webinar, October 2, 2018]


Vera Mucaj introduced Datavant, a San-Francisco based healthcare startup that helps build the pipes for healthcare data sharing at the patient level. Datavant enables linking of patient-level healthcare data across institutions without the need to share personally-identifiable information (PII). Datavant customers use the technology to assemble a more holistic view…

Understanding Visual Intelligence & Data Visualization [Webinar, October 24, 2018]


The Donaghue Foundation and the Health Research Alliance joined with HealthDataViz, a Boston firm that specializes in helping healthcare organizations design and present visual displays of data, and offered this webinar on the fundamentals of data visualization. The webinar: Offered guidance on best practices for creating and distributing visualizations Provided…

How NCI is Leading on Data Sharing [Webinar, October 9, 2018]


The Data Sharing Working Group hosted a webinar featuring Jaime Guidry Auvil, the Director of NCI’s Office of Data Sharing. Jaime shared the efforts that are in motion at NCI and NIH that aim to promote the data sharing ecosystem. Importantly, she reported on the impressive steps that NCI is…

Finding, Evaluating, and Promoting the Impact of your Research for Nonprofit Funders – how to use the new Dimensions functionality (led by Dimensions). [Webinar, September 18, 2018]


To identify and showcase how organization’s resources have made an impact attendees learned how to answer questions such as: Did your funding keep researchers in the field? Has your research impacted policy? Are there links between patents and your funding or publications? Did publications from your research become prominent, widely…

ORFG “Open 101” Tip Sheets for Research Stakeholders

ORFG has made available a suite of resources designed to help specific audiences understand the benefits of open science. Comprised of a mix-and-match set of tip sheets designed for grantees, program officers and staff, and foundation leadership, the materials can help research funders build effective campaigns for the adoption of…

Indirect Costs (aka “F&A”): There are more to IDC’s than you think [Webinar, September 6, 2018]


In this webinar, we continued the productive dialogue between Universities and Funding Organizations.  We discussed what are “indirect costs” – what are behind these expenses, how may some of these be research project-specific costs, what does this all mean. Be informed and understand the nuances of this discussion as we…

Nonprofit Funding Models

Meeting | Webinar

The philanthropic sector in general and the membership of the Health Research Alliance in particular, is composed of a diverse set of organizations who have contributed to advancing biomedical research by developing human capital; building knowledge and expanding scientific disciplines; supporting institutions; stimulating innovation; translating discoveries into cures, therapeutics and…

How Funders Can Diversify the Healthcare Workforce [HRA Members Meeting, Spring 2018]


Evidence has shown that a diverse healthcare workforce not only improves patient care outcomes, it also allows organizations to be more productive, creative and innovative. Still, minorities face slower promotion rates and are significantly less represented in leadership and academic career positions. At the Spring 2018 Health Research Alliance Members…

Drug and Other Therapy Development Toolkit of Toolkits [Work in Progress]

Under development by the Drug and Other Therapy Development working group, this “toolkit of toolkits” will enable member organizations to more easily identify and access existing and up-to-date resources relevant to DOTD working group goals. Drug and Other Therapy Development References U.S. Food and Drug Administration – for the latest developments…

University-Foundation Relations – BIO Session Summary [FasterCures, June 2015)


In recent years, the nonprofit and academic communities have acknowledged that relationships between nonprofit disease foundations and research institutions are evolving. Although in many ways this evolution presents new and exciting opportunities, these changes have also brought about new conflicts. To advance the discussion around these relationships and brainstorm new paths forward, FasterCures…

University-Foundation Relations Session on Indirect Costs [FasterCures, November 2016]

FasterCures invited a small group of stakeholders to participate in a private session focused on indirect costs, during the 2016 Partnering for Cures conference in New York, NY.

Keeping the Lights On [Nature, November 2014]

Every year, the US government gives research institutions billions of dollars towards infrastructure and administrative support. A Nature investigation reveals who is benefiting most.

Use of HRA Reporter and Researchfish to Evaluate Your Grants Portfolio [Webinar, August 30, 2018]


Arun Karpar from Autism Speaks highlighted the use of HRA Reporter data; while Suzanne Rix from the Association of Medical Research Charities demonstrated the utility of Researchfish.

Spring 2018 Members Meeting Session: ORCID Reducing Burden and Improving Transparency (ORBIT) Project

ORBIT is a strategy to reduce investigator burden and improve funder efficiency through the use of persistent identifiers. ORBIT is a partnership between the NIH and ORCID that expands the ORCID data model to collect faculty profile information. The presentation described efforts to assign Digital Object Identifiers (DOIs) to grants…

Intro to Data Sharing [Webinar #1, July 11, 2017]


This one-hour webinar was the first of two sessions that introduced participants to the various types of data and data sharing platforms currently available. JOURNAL RESOURCES REFERENCED DURING THE WEBINAR PLOS Data Sharing References PLOS Policy PLOS Recommended repositories A Registry of Research Data Repositories Data policy FAQs Preparing clinical…

Open Research Funders Group Resources

The Open Research Funders Group (ORFG) is a membership-based partnership of funding organizations committed to the open sharing of research outputs.

Implementing a System to Enable Credit for Data Sharing

April 9, 2018 The Association of American Medical Colleges (AAMC), the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (MRCT Center), and the New England Journal of Medicine (NEJM) launched the Credit for Data Sharing initiative to describe and implement a system to appropriately credit researchers for sharing data.

Board on Research Data and Information/US CODATA

November 1-2, 2017 National Academy of Sciences The mission of the Board on Research Data and Information (BRDI) is to improve the stewardship, policy, and use of digital data and information for science and the broader society.

Data Sharing Goals for Nonprofit Funders of Clinical Trials

November 30, 2017 Sharing Clinical Trial Data Action Collaborative: Data Sharing Goals for Nonprofit Funders of Clinical Trials National Academy of Sciences

Funder Data Sharing Policies: Overview and Recommendations [RWJF Report]

A report funded by Robert Wood Johnson Foundation and written by Stephanie Wykstra. Research transparency – sharing data and other materials for further research and re-analysis – is on the rise. Many people and institutions in the research ecosystem have pointed to potential benefits of transparency, from accelerating scientific progress to increasing reliability…

HRA Member Data Sharing Policies

The HRA member data sharing policies that Heather McCartney, HRA’s Data Sharing Intern, has collected can be found above. (To submit your data sharing policies email Maryrose [at] healthra [dot] org)


QB3 includes five incubators, two seed-stage venture capital firms, and a special initiative in medical devices called the Rosenman Institute. QB3 supports University of California researchers and empowers Bay Area entrepreneurs to launch startup companies and partner with industry.

AlzPED database

AlzPED is a database for preclinical studies of Alzheimer’s disease. It includes information on animal models, biomarkers, therapeutic agents/targets, patents, etc

JLABS: part of Johnson & Johnson Innovation

JLABS is a part of Johnson & Johnson Innovation. It is a life science incubator with an aim towards developing healthcare products from current scientific discoveries through a “capital-efficient, resource-rich environment.”

FasterCures “Issues” and “Tools you can use”

FasterCures also has a tab of “Issues” along with links to “Tools you can use” on those topics, a few of which are listed above.  Other Issues with links are Collaborations, IP, Management and Accountability, R and D System, Value and Coverage, and Venture Philanthropy.  There are also case studies available….

FasterCures Toolkit on the TRAIN website

Link to the a toolkit on the TRAIN website which is broken down by different types of partnerships.   On each of the above sites they have links to “Tools you can use.” These include various PDFs or word docs for checklists or agreement templates, informational websites, etc.

Rescuing U.S. Biomedical Research from Its Systemic Flaws [Proceedings of the National Academies of Sciences, April 2014]

In a Proceedings of the National Academies of Sciences publication by Bruce Alberts, Marc Kirschner, Shirley Tilghman and Harold Varmus (2014). Leading academics in biomedical research described a series of issues they felt were leading to a hyper-competitive environment in the US academic system, negatively affecting young researchers, and potentially…

Shaping the Future of Research:  A Perspective from Junior Scientists [Webinar, September 2015]


Jessica Polka, PhD, and Kristin Krukenberg, PhD, both of Harvard Medical School,  organized of the Future of Research Symposium. In a webinar, they presented the primary issues they were seeking to address.

Seven Actionable Strategies for Advancing Women in Science, Medicine, and Engineering [Cell Stem Cell, March 2015]

Achieving gender equality in science will require devising and implementing strategies to overcome the political, administrative, financial, and cultural challenges that exist in the current environment. This forum proposes an initial shortlist of recommendations to promote gender equality in science and stimulate future efforts to level the field.

The Report Card for Gender Equality [New York Stem Cell Foundation, 2017]

NYSCF’s Institutional Report Card for Gender Equality helps to incorporate the Seven Actionable Strategies for Advancing Women in Science, Medicine, and Engineering into its own programs and encourage others to do the same.

Approaches to Achieve Gender Equity in STEM Faculty: Successes, Hurdles and Opportunities for Collaboration [HRA Members Meeting. Spring 2016]

This session presented data on gender inequities in STEM faculty and on the new interventions that academia and funders have implemented to promote retention and advancement of female faculty conducting research on human health. Stephanie Abbuhl, MD, Professor & Vice Chair Faculty Affairs, Department of Emergency Medicine and Executive Director,…

Strategies for Increasing Diversity in the Workforce [HRA Members Meeting, Spring 2018]

This session focused on the challenges and opportunities of diversity and unconscious bias that women and minorities face in peer review in academic science. Anna Kaatz, PhD is the Director of Computational Sciences at the UW-Madison Center for Women’s Health Research. Shirley Malcom, PhD is the head of Education and…

Introduction to Health Services Research Resources: HSRProj and NICHSR [Webinar, August 21, 2018]


On this webinar, attendees were given a tour of the HSRProj database and insights on how to use it. Examples of analytic products and additional AcademyHealth and NLM resources, including HSRR (Health Services and Sciences Research Resources), Health Services Research Information Central (HSRIC), and NICHSR ONESearch, will also be highlighted.

Perceptions of Risk Evaluation in Grant Peer Review by Applicants and Reviewers [American Institute of Biological Sciences, February 2018]

The American Institute of Biological Sciences (AIBS) published findings from research it conducted on reviewer and applicant perceptions of criteria usage and risk evaluation in grant peer review. The manuscript, entitled “Risk evaluation in peer review of grant applications” was published online in late February 2018 in the journal Environment Systems…

Entrepreneurial Review Scorecard [Chron’s and Colitis Foundation, January 2017]

At the Tristate Area Regional Members Meeting in January 2017, attendees heard about the Entrepreneurial Investing Initiative to fund the development of products with the potential to benefit patients. Applicants are expected to propose exceptional scientific research combined with commercial merit. Crohn’s & Colitis Foundation staff and advisors have developed…

Validity of Peer Review Examined by American Institute of Biological Sciences [Frontiers in Research Metrics and Analytics, August 2018]

The American Institute of Biological Sciences (AIBS) published in August 2018, a literature review summarizing results of empirical tests on the validity of peer review decisions using impact measures of investigator output. These results were published as part of a research topic for the journal Frontiers in Research Metrics and Analytics.

Listserv Responses: Culling LOIs [October 2018]

Listserv Summary

What is your process of LOI review for a program or mechanism?  What is the count of LOIs you get and what number do you allow to submit full applications?

American Institute of Biological Sciences (AIBS) Council of Member Societies and Organizations

American Institute of Biological Sciences (AIBS) Council of Member Societies and Organizations 2016 Meeting AIBS hosted a meeting Titled “The Role of Peer Review in Informed Decision-making.”  The meeting tackled questions: Do we know what we need to know about peer review? Does peer review meet the needs of the modern…

Transparency, Recognition and Innovation in Peer Review in the Life Sciences [ASAPBio Meeting Summary, February 2018]

ASAPbio, Howard Hughes Medical Institute, and the Wellcome Trust held a meeting to discuss the merits of transparent peer review. If it is desirable, how can it be implemented and what might be barriers to adoption?  The agenda and links to the slides and talks can be found on the ASAPBio site. Recommendations…

Strategy in Action (Fall 2017 HRA Members’ Meeting)

At the Fall 2017 HRA Members’ Meeting in Chicago, Melissa Stevens of the Center for Strategic Philanthropy at the Milken Institute provided  in-depth perspective on the “how to” regarding framing the strategy and next steps for either organizational or programmatic planning. According to Stevens, philanthropic investment in medical research has an…

The FAIR Guiding Principles for Scientific Data Management and Stewardship (External Resource)

One of the most valuable resources for HRA and others in the community has been the FAIR Guiding Principles for Scientific Data Management and Stewardship published in Nature.  This article describes four foundational principles—Findability, Accessibility, Interoperability, and Reusability.  These principles should apply not only to ‘data’ but also to the…

Making Science Open via Preprints (Fall 2016 HRA Members’ Meeting)

In addition to learning about the COS Preprints service, HRA explored the risks and benefits of encouraging our awardees to use preprints to publish their research.  At a session at the Fall 2016 HRA Members’ Meeting entitled “Understanding preprints, an emerging model for publication in biology” we heard from 3…

Good Practices for University Open-Access Policies (External Resource)

Good Practices for University Open-Access Policies is a valuable resource for universities and funding organizations that want to implement open access policies. Especially of use to funders would be the sections on Drafting a Policy and Filling the Repository, which covers incentives for authors to deposit their work themselves, as well…

Open Science Pre-Registration: Approaches to Ensuring Reproducibility and Transparency (Fall 2017 HRA Members Meeting)

HRA members learned about preregistering research at the Fall 2017 HRA Members Meeting in Chicago in a session entitled “Open Science – Pre-registration: Approaches to ensuring reproducibility and transparency.” Reproducibility and transparency are critical elements to advancing biomedical research while providing scientists a tool for the future to better understand…

The Challenges to Reproducibility in Biomedical Research (Brian Nosek, Fall 2015 HRA Members Meeting)

Dr. Brian Nosek, Executive Director, Center for Open Science Fall 2015 HRA Members Meeting, Cleveland, OH An academic scientist’s professional success depends on publishing. Publishing norms emphasize novel, positive results. Therefore, disciplinary incentives encourage design, analysis, and reporting decisions that elicit positive results and ignore negative results. These incentives can…

Maximizing Research Impact: How Promoting Open and Reproducible Research Helps Funding Organizations Meet Their Mission (December 2016)

A partnership between HRA and Center for Open Science designed to increase openness, integrity, and reproducibility of research HRA partnered with the Center for Open Science to co-host a December 2016 meeting: Maximizing Research Impact: How Promoting Open and Reproducible Research Helps Funding Organizations Meet Their Mission.  The linked Open Science…

Tracking Funding, Reducing Burden and Increasing Transparency

HRA Members Meeting Spring 2018 Given the fragmented system of funding and employing researchers, it is difficult to directly and clearly measure the impact of funding. Some government and non-governmental funders are piloting strategies to reduce the burden placed on investigators by providing information in tedious entering mechanisms and to…

Strategic Planning

More and more stakeholders (boards, donors, patients) are asking for evidence of impact and outcomes. Strategic planning can be valuable to an organization because it provides a sense of direction and outlines measurable goals to demonstrate impact. Strategic planning is the process of determining the goals your organization intends to…

Implementation of Funder Data Sharing Policies

HRA Members Meeting Spring 2018 At the March 2018 Members Meeting, HRA members and clinicians shared their processes, considerations, and implementation of data sharing policies. Encourage and facilitate reagent and data sharing The St. Baldrick’s Foundation, a not-for-profit organization with the aim of raising funds to help find cures for…

Breaking the mold: New models in research funding

HRA Members Meeting Spring 2018 Traditional research funding mechanisms usually require a regimen of standard documents and peer review processes. At the Health Research Alliance Member Meeting in New York in March 2018, three leading organizations presented their new approaches to accelerate innovation by using novel funding mechanisms. Partnership with…

How Funders can Diversify the Workforce

HRA Members Meeting Spring 2018 Evidence suggests that an increased diversity not only improves patient care outcomes, but makes groups also more productive, creative and innovative. Still, minorities face slower promotion rates and are significantly less represented in leadership and academic career positions. At the Spring 2018 Health Research Alliance…

Funding Health Services Research

HRA Members Meeting Spring 2018 The multidisciplinary field of Health Service Research (HSR) focuses on the factors affecting research outcomes including its costs, quality, accessibility, delivery, organization, and financing, with the goal to optimize health services for individuals and populations. At the Spring 2018 Members Meeting in New York, three…

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