How We Share and Use Research: Our Open Research Approach

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As part of the Disability Matters project, we are committed to a way of working called open research. This means we believe that research should be shared widely and used to make a difference—but always in a way that respects the people who take part in it. We believe people with disabilities are not just participants—but knowledge holders. Your ideas, stories, and experiences are central to our work. The research we do together will reflect what you share with us. Hence, we would like to discuss this with you before you agree to take part in our research.

What is Open Research?

"Open research" refers to a research approach that emphasises transparency, accessibility, and collaboration throughout the entire research process. It's part of the broader "open science" or "open scholarship" movement and is intended to make research more reproducible, trustworthy, and useful to a wider audience.

Key Features of Open Research:

• Open Access: Research papers and findings are made freely available to the public, without having to pay for it.
• Open Data: Anonymised data sets created by research are shared so others can reuse the data.
• Open Methods/Protocols/information sheets/consent forms: Details about the methodology and the methods used in research are published in detail, enabling others to use them.
• Open Source: Code and software developed during research are shared openly [we will not create this on our project].
• Open Collaboration: encouraging researchers to work openly and collaboratively with others, including non-academic contributors such as NGOs like AADI and Swabhiman, community groups or individuals outside the university, through some platforms like GitHub, Open Science Framework, etc.
• Open Education: Teaching materials and research training resources are made openly available.

Why are we doing this?

We believe open research can:

• Make research more trustworthy and inclusive.
• Let others learn from our work, especially across different countries and communities.
• Support not only university researchers but also researchers from other communities to carry out their own research (e.g. NGOs, INGOs, DPOs, activist organisations)
• Help push for change by making disabled people’s voices, perspectives and aspirations recognised in health and policy spaces.
   

But we are also approaching it with care, especially when working with marginalised communities. We want to make sure your knowledge is shared with dignity, respect, and safety.

Opening up Research with Care

We will share the findings of this project (for example, in reports, articles, and presentations) so that others—like policymakers, activists, other disabled people, and researchers—can learn from it.

But we will not share your raw, personal data and we will not share data that you do not want to be shared publicly. Instead, we will:

• Use summaries of what we gathered, not full recordings.
• Anonymise or pseudonymise your contributions (unless you ask to be named).
• Store everything securely and responsibly.
• Put protocols in place for how other researchers can use our materials in the future.
• We will give a written context to all the data we share: so potential users know why the data was collected and for what purposes.

We will never share your story in a way that puts you or your community at risk. We seek to work with you to decide together what we will do with your data.

Protecting your stories and experiences

We know that stories and experiences can be powerful and deeply personal. Because of this:

• All recordings and notes will be kept private within the research team.
• We will delete recordings after we create written versions that remove identifying details.
• If you choose to be anonymous, we will carefully check to make sure no one can recognise you in what we share.
• If someone wants to use our research in the future, they must follow a special process and agree to our protocols.

Questions?

If you have questions or concerns about how your contributions will be used or shared, please feel free to ask any member of the research team. We are happy to explain more and make adjustments that feel right for you.