Grants/Unlocking health information

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Unlocking health information

Applicants: UK Consortium on AIDS & International Development (AIDSPortal Initiative), Appropedia
Affiliation: None
CC affiliated? No
Contact: Robert Worthington, Chris Watkins
Coordinator: Robert Worthington, Chris Watkins
Project Start: 2010/09/15
Project End: 2011/04/15,,
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Describe the project you are proposing as clearly as possible in just five sentences.

This project will help unlock lifesaving health and development information, making it more accessible under Creative Commons licenses. Usage and awareness of Creative Commons licenses is low among the health and international development sector, with few organisations using the Creative Commons mark on their content. The argument for open access licensing is compelling - (i) Increasing access to health information will help save lives and (ii) public funds are often used to pay for the development of health information. This project will use existing relationships with NGOs, donors, health information managers and academics to make this argument, with the aim of changing information licensing practice in the health and development sector.

Detail the tangible project output (e.g., paper, blog post, written materials, video/film, etc.; this would be in addition to the final written report that successful grant recipients will be expected to deliver to CC at the conclusion of the project).

The project will have two main outputs. (i) A new community of practice on health information and licensing that engages interested practitioners via an eForum. (ii) At least 3 large NGOs, 1 donor, 1 academic institution and 2 health information managers agree to use Creative Commons licensing for their content.

Describe the community you are targeting. How would the project benefit the community?

The project ultimately targets people in the developing world in need of health services. They will benefit from better informed health practitioners. Health practitioners are indirectly targeted. They will benefit from access to more information from more sources. The project directly targets those that produce and manage health information. They will benefit from guidance on licensing, increased impact of information they produce and (in case of those managing health information databases) the opportunity to combine and mashup information from different />

What is your relationship with the community you are targeting? Why are you the best individual/organization to lead this project? Do you have prior experience in related projects?

AIDSPortal has strong links with organisations in the HIV and AIDS sector. Most of these organisations work in the broader health and development sector. AIDSPortal is well known for it's role as an information facilitator. Many of the organisations that we plan to target already have strong relationships with AIDSPortal and are receptive to suggestions on ways of improving information management. AIDSPortal has managed a number of similar projects, working to facilitate better management of health information.

Appropedia has links and experience with organizations in the international development and public health sector, through its own work and through the contacts of its directors and community (including Andrew Lamb, director of the Appropedia Foundation and CEO of Engineers Without Borders UK). It also has strong links with academia, and one of Appropedia's wiki admins has professional experience in HIV specialty care and health information technology. Appropedia has actively advocated for Creative Commons licensing (specifically CC-BY and CC-BY-SA) within the international development and sustainability spheres, and successfully prompted several informative sites to move to one of these licenses.

How will you measure and evaluate your project’s impact - on your main participants? Other contributors? On the larger community?

The full impact of this project may not be apparent for some time. We will track impact over the project timeline by recording number of NGOs, academic institutions, donors and health information managers agreeing to use Creative Commons licenses for their content. We will also estimate the number of new publications or other content made available as a result of these actions. We will track potential impact using process indicators like number of individuals contacted, number of meetings held and number of practitioners signed up to the eForum.

How many participants do you expect to be involved in your project? How will you seek and sustain their involvement?

The potential scope of the project is enormous. To limit this, we will focus primarily on organisations based in the UK and USA, where AIDSPortal and Appropedia have good contacts. Within these countries we will focus on organisations that produce or fund the production of the following types of information:

• Publications focusing on health policy or practice (50 NGOs will be targeted)

• Peer reviewed or other types of academic research (10 academic institutions will be targeted)

• Metadata for health information databases (5 health information managers will be targeted)

• Funders of health information (5 donors will be targeted)

The easy-access eForum will support communication among a community of practice. This will provide a space for ongoing dialogue around these issues. Through the dedicated blog, as well as our existing blogs, newsletters, other social media, and the social media of friendly organizations, we will explain and promote the project, to potentially attract institutions in addition to those targeted.

Describe how your project will benefit Creative Commons' mission to increase the amount of creativity (cultural, educational, and scientific content) in "the commons".

We expect the project to result in at least 3 large NGOs, 1 donor, 1 academic institution and 2 health information managers agreeing to use Creative Commons licensing for their content. It will also result in a new community of practice in the health sector to advance this mission.

Describe what technologies and tools your project will use. What kinds of technical skills and expertise do you bring to the project? What are your technical needs?

AIDSPortal will set up an eForum and a blog to support project communications. Appropedia will provide expertise on licensing. We will also seek technical inputs from others to gather evidence and develop a business case for moving to Creative Commons content licensing.

What challenges do you expect to face, and how do you plan to overcome them?

Finding the right person to engage with within a large organisation is often challenging. AIDSPortal already has close linkages with over 100 NGOs in the UK and the USA. This should reduce the time needed to find and contact the relevant person. In some cases the linkage with communications teams are already well established.

Making a strong case for Creative Commons licensing will take time, but Appropedia has already tailored a case for the aid and development community, which can provide a base for this project.

For donors in particular, there are significant costs associated with open access publishing. Currently donor funded research is typically published in a paid access journal. If donors request that researchers they fund publish under open access licenses, they will need to allow for the additional cost in their funding agreements. A strong business case will be needed to show the benefit of this approach. The combined weight of AIDSPortal's and Appropedia's names in this field will strengthen our case.

Many of the target organisations are large and have established practices. Even with internal support, change may be slow. We have set targets accordingly.

How do you plan to sustain your project after the Creative Commons funding has ended? Detail specific plans. How do you plan to raise revenue to continue your efforts in the future?

This proposal provides a template for a larger project. Establishing a strong community of practice will help us gauge interest in expanding the scope further. Even if there is no interest in expanding the project, the support networks and eForum will remain, AIDSPortal and Appropedia will always be advocates for open licensing in health information, and changes achieved in practice should be sustained. Some additional ideas for an expanded scope:

  • Target additional countries. The project will initially target only two countries, both of which are English speaking. Other countries could be included.
  • Establishing a health content registry. Creative commons licensing is only one component of making content more accessible. Ideally health information should be available in ways that enable health information providers to combine data sources (ie create mashups) and aggragate information from different sources. For this to be possible we will also need to collect information on:
1. What data is available?,
2. Where it is held?
3. What format it is in?
4. What kind of data is it?
5. What does it cover?
6. What the licensing conditions are for that data?

A health content registry would provide a space to share this information.

How can this project be scalable, or have a scalable impact?

This is potentially a large project. We have set modest targets to begin with, as the funds available from this grant are limited. The process and outcomes are applicable and replicable in other sectors. We will share experiences with anyone interested in doing this. The previous section discussed other ideas for scaling the project.

What resources and support do you expect Creative Commons to provide to your project to ensure its success (if any)?

We may need help gathering evidence to develop a business case, including examples of licensing and outcomes that shed light on the case for open licensed health information.

Describe how your organization currently communicates with its community members and network partners. (100 words)

AIDSPortal manages the website to facilitate communication with over 30,000 HIV and health practitioners. AIDSPortal also works closely to build the communication capacity of other health networks, enhancing their ability to communicate with their members.

Appropedia communicates with its community through its wiki talk pages, automatic page-change updates, discussion lists, blogs and social media. When engaging with partners in helping them apply open licenses, Twitter, email and Skype have been used. Topic-based newsletters are currently being set up are expected to be established before the project would start.