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SPARC Innovator: Health Research Alliance

Open Access

While the debate continues over U.S. federal policies to ensure the results of scientific research are openly accessible online, a key group of critical, private research funders has moved quietly and steadily to make such policies a reality.

The Health Research Alliance, a group of 52 not-for-profit, nongovernmental funders of health research and training – including the American Cancer Society, Burroughs Wellcome Fund, and Autism Speaks – has made provisions to encourage its members to implement strong policies to make articles that report on the research that they fund openly accessible online to the public. The HRA member funders collectively invest more than $1.5 billion in research funding per year.

HRA began in the late 1990s as a loose-knit group of representatives from a dozen or so private foundations and voluntary health agencies. The group met every few years to talk about common interests, share operational procedures and best practices, and discuss how to make their funding of medical research more effective.  In 2005, Kate Ahlport was hired as the organization’s first executive director to formalize the network, implementing a membership structure and a governance structure. The hope was to share best practices and accomplish more as a cohesive group than any one organization could alone.

Photo of Kate Ahlport

Photo of Kate Ahlport

HRA focuses on facilitating the exchange of information among member organizations, updating the membership on developments in the landscape for biomedical research and training, and, where appropriate, leveraging collective action. In 2011, one of the issues the Alliance tackled was public access to scientific research. Consistent with the founding principles of the HRA – to educate the membership on critical issues and to facilitate action for interested member organizations – the Public Access Task Group, a subcommittee of HRA’s Discovery Science Working Group, was formed to advance this issue by working collectively.

The Task Group’s exploration led to the 2012 HRA Public Access Initiative. A variety of resources were assembled and shared with the membership for interested members to use when adopting a public access policy. For its efforts in promoting the sharing of scientific information to the nonprofit community, SPARC recognizes the Alliance as its January 2013 Innovator.

“HRA’s deep commitment to providing broad accessibility to the results of the critical research that their members fund is inspiring,” says Heather Joseph, Executive Director of  SPARC. “Their work to educate member organizations on the benefits of Expanded Access, to develop strong and pragmatic policy recommendations, and also to contribute to the creation of infrastructure to implement such policies make them an exemplary model for other research funders.”

The process began in late 2010 with a webinar presentation to the HRA membership by Joseph of SPARC and Sophia Colamarino, then of Autism Speaks.  In 2011, after a discussion of new methods of communicating science at a meeting in New York, the Public Access Task Group began to examine the issue further. It was determined early on that advocating for open access (free and unrestricted re-use of information) was not realistic, but rather public access (unrestricted access to a public online repository following an embargo) was the most appropriate initial approach.

“I think members will become more interested in open access in time. This is our first attempt,” says Ahlport. “We saw this as an interim step until the environment catches up.”  It was a question of taking “baby steps,” says Stephen Rose, Ph.D., Chief Research Officer of the Foundation for Fighting Blindness, who led the eight-member task group. With only certain journals adhering to open access, HRA members didn’t want to dictate where their researchers could publish, limiting their options. “We want articles to make it out to the public as fast as possible. The best way, without a total uprising, was to go with public access,” says Rose.  Many organizations already work with researchers who follow NIH policy and deposited their work in in PubMed Central, making this approach the best fit.

The Task Group decided first to educate members.  In addition to the 2010 webinar and meeting with the Task Group, SPARC provided templates for policies and other resources, such as assistance in developing a guide on expanded access for member organizations.  “SPARC has provided a lot of background information and helped us all along the way,” says Rose. The Alliance also looked to access policies already adopted by one of its member organizations, Autism Speaks.

The Howard Hughes Medical Institute provided funding to help with the development and technical aspects of the initiative. “There were a lot of really great people who had  expert information and resources that they were willing to share with us to move this initiative forward,” says Heather Snyder, Ph.D., a member of the Task Group, Co-Chair of the HRA Discovery Science Working Group, and Director, Scientific Grants for the Alzheimer’s Association, an HRA member organization. It did not take much persuading of the membership about the value of public access, it was more a matter of awareness, says Snyder.

The issue of public access was not at the top of mind for many HRA members, says HRA Board Chair Sally McNagny, M.D., M.P.H., Vice President of The Medical Foundation, a division of Health Resources in Action of Boston. But education from experts in the area made a difference. “We are a pretty easy group to win over,” she says. “We all have a common belief in accelerating the pace of medical discovery and broadening access.”

McNagny, a physician scientist, says more than a decade ago she was struck by the need to provide broad access to medical research to those outside of university settings. “It’s a social justice issue,” she says. “I respect the reality of what journals are facing, but it’s time to rethink their business model. At the end of the day, the information should be shared.”

To get the word out to the membership, Rose says it’s a matter of informing, not selling the idea of public access. “We present the facts, what we are doing, and the bottom line is that we show what we believe are the benefits and member organizations are going to make up their own minds,” he says.

Adopting a public access policy can be a “value added” for organizations, says Rose. “It allows us to be able to report back to our donors and board of directors, what you are really getting for your buck for what you are putting in,” he says. It also provides accountability for organizations to be able to better track the impact that their money is having on research. “People don’t have time to follow all the journals,” says Rose. “It’s a way for foundations like us to be the information exchange to help people.”

McNagny says sharing research results is another way to maximize the impact of research funding. “Looking across the scientific community, there has been a sea change. I expect more will move to open access,” she says. “This was a critical step to get comfortable with the concept.”

As momentum towards open access continues, Ahlport expects the road will be easier for other advocacy groups.

“I hope that the Alliance’s participation will contribute to the tipping point so the environment is more conducive to make funding of research available to the public at the earliest possible time,” says Ahlport.

Part of the HRA strategy was to make adopting a public access policy optional for its members. “We didn’t want to be dictatorial,” says Rose. “Some groups have a good reason for not doing it. It comes down to a carrot-and-stick issue. We don’t use a stick.”

In the first wave, nine organizations stepped forward wanting to adopt a public access policy.

Rose says by members embracing the policy in phases, they can get the bugs out and improve the resources.

McNagny’s organization, The Medical Foundation, will be one of the early adopters of a public access policy. “We signed up. We are happy to work through the system…I’m confident the vast majority of research funders will support it within three years.”

Getting the HRA initiative together within a year and a half was a group effort, but members credit Ahlport with being the engine behind the work. “Kate is the ultimate organizer,” says Rose. “She was the person who has been behind it and making sure it didn’t stall.” The Task Group members were all volunteering their time, so they relied on Ahlport to do most of the writing and compiling of resources.

Ahlport says she valued their time and expertise of the Task Group members. “Their input and review was essential,” she says. “I rely on them to help me understand what is palatable for members.”  Also, the involvement of SPARC, the National Library of Medicine, PLoS and other partners helped the initiative come together. While it was more complex than they first realized, Ahlport would encourage other organizations to give themselves enough time for the process and to explore public access policies.

“It is a gratifying project,” says Ahlport. “Without support, we could have floundered. But the project came about for the greater good.”

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