Open Access Week: Nothing about me, without me

In a 2011 speech about shared decision making in healthcare, the UK Secretary of State, Andrew Lansley, coined the phrase “nothing about me, without me”. Used at the time to summarise efforts to empower patients in decisions about their care, the phrase has since been borrowed by advocates and activists on a range of social justice topics.

This year’s Open Access Week poses the question: “How, in a time of disruption, can communities reassert control over the knowledge they produce?” Here at OUP, we were inspired to delve into our open access publishing for examples of research that doesn’t just study communities, but actively involves them. From shaping research questions to guiding implementation, these projects center the voices and experiences of the people at their heart. This commitment to community-led knowledge creation isn’t limited to the articles themselves. It’s reflected in the editorial policies, peer review practices, and team structures that support our journals—ensuring that open access is not just about availability, but about equity and inclusion in research and publishing processes:

• Our Editors and authors publishing with Oxford Open Immunology use the Sex and Gender Equity in Research (SAGER) Guidelines to promote reporting of sex- and gender dimensions in research.
• The European Journal of Public Health is one example of a publication creating space for the promotion of the CARE Principles for Indigenous Data Governance, supporting the ability of Indigenous Peoples to control the use and application of Indigenous Knowledge and data for collective benefit.
• Many of our journals, Nucleic Acids Research included, utilise Early Career Boards to ensure their publications are managed in a way that serves the next generation of researchers and provides those earlier in their careers with experience contributing to journal development.
• Health Promotion International has created a special collection of research on participatory approaches in health promotion.
• Oxford Open Immunology has an open call for papers promoting the use of patient knowledge in research literature.
• JNCI: Journal of the National Cancer Institute and JNCI Cancer Spectrum are committed to supporting and advancing diversity, equity, and inclusion in editorial practices and published content. Recognizing that many populations have been systematically excluded from scholarly publishing, the journals have several initiatives strengthening diversity.

From participatory research approaches to elder care, to self-determination paths for trans and gender diverse people, to rural ownership of businesses in areas of high tourism, and citizen empowerment during energy transitions – our open access publishing is full of examples of the benefits of including people in the process of generating knowledge about them. All articles included here are published with an open access license, ensuring peer-reviewed, trusted knowledge and diverse voices can reach everyone, anywhere in the world:

Diversity in Health Interventions

Self-determination and self-affirmative paths of trans* and gender diverse people in Portugal: Diverse identities and healthcare by C Moleiro et al, European Journal of Public Health

Counting everyone: evidence for inclusive measures of disability in federal surveys by Jean P Hall et al, Health Affairs Scholar

Creating inclusive communities for LGBTQ residents and staff in faith-based assisted living communities by Carey Candrian, Innovation in Aging

Developing a co-designed, culturally responsive physical activity program for Pasifika communities in Western Sydney, Australia by Oscar Lederman et al, Health Promotion International

Co-creating a Mpox Elimination Campaign in the WHO European Region: The Central Role of Affected Communities by Leonardo Palumbo et al, Open Forum Infectious Diseases

Participatory development of a community mental wellbeing support package for people affected by skin neglected tropical diseases in the Kasai province, Democratic Republic of Congo by Motto Nganda et al, International Health

Inclusive Digital Health Strategies

The ATIPAN project: a community-based digital health strategy toward UHC by Pia Regina Fatima C Zamora et al, Oxford Open Digital Health

From disease specific to universal health coverage in Lesotho: successes and challenges encountered in Lesotho’s digital health journey by Monaheng Maoeng et al, Oxford Open Digital Health

Implementing an inclusive digital health ecosystem for healthy aging: a case study on project SingaporeWALK by Edmund Wei Jian Lee PhD et al, JAMIA Open

Developing the BornFyne prenatal management system version 2.0: a mixed method community participatory approach to digital health for reproductive maternal health by Miriam Nkangu et al, Oxford Open Digital Health

Equitable Energy Transitions

Energy communities—lessons learnt, challenges, and policy recommendations by L Neij et al, Oxford Open Energy

Solar-Powered Community Art Workshops for Energy Justice: New Directions for the Public Humanities by Anne Pasek et al, ISLE: Interdisciplinary Studies in Literature and Environment

Community participation and the viability of decentralized renewable energy systems: evidence from a hybrid mini-grid in rural South Africa by Mahali Elizabeth Lesala et al, Oxford Open Energy

Quantifying energy transition vulnerability helps more just and inclusive decarbonization by Yifan Shen et al, PNAS Nexus

Renewable energy and energy justice in the Middle East: international human rights, environmental and climate change law and policy perspectives by A F M Maniruzzaman et al, The Journal of World Energy Law & Business

Protecting Local Cultures

Enriching Cultural Heritage Communities: New Tools and Technologies by Alan Dix et al, Interacting with Computers

A framework for tourism value chain ownership in rural communities by Michael Chambwe et al, Community Development Journal

Local government engagement practices and Indigenous interventions: Learning to listen to Indigenous voices by Christine Helen Elers et al, Human Communication Research

The strengths, gender, and place framework: a new tool for assessing community engagement by Justin See et al, Community Development Journal

^{Featured image by Mareike Mgwelo via Pexels.}