Suggested resources list

If you’d like to delve even deeper into the power of patient advocacy in genomics, take a look at some of these extra resources. And do let us know if you have any others to add to the collection, in the Comments section below.

Overcoming common objections to patient engagement in research

Here is an open letter, published in the British Medical Journal (BMJ) 2025: Dear Sceptics of Patient Engagement in Research, by Dawn P. Richards: https://www.bmj.com/content/388/bmj.r133

Ethics, equity and involving diverse communities

Public Engagement in Data Research Initiative (PEDRI) (UK) published Good Practice Standards for Public Involvement and Engagement in Research, January 2025, for health data custodians – website: Our work – PEDRI

Genomic sequencing in diverse and underserved pediatric populations: Parent perspectives on understanding, uncertainty, psychosocial impact, and personal utility of results Barbara B Biesecker et al. Genet Med. 2025 Apr. https://pubmed.ncbi.nlm.nih.gov/39846247/

Lessons learnt from developing an ethnically diverse patient and public involvement group for breast cancer research https://bmjopen.bmj.com/content/15/3/e091888

Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care (Sahan, Parker, Lucassen et al, 2025, EJGH): https://www.nature.com/articles/s41431-025-01866-1

Developing Best Practices of Community Engagement for Genomics and Biobanking in Africa – CEBioGen A Ghansah & P Tindana: https://h3africa.org/index.php/developing-best-practices-of-community-engagement-for-genomics-and-biobanking-in-africa-cebiogen/

Nuffield Council on Bioethics / Ada Lovelace Institute joint project: AI and genomics futures https://www.nuffieldbioethics.org/project/ai-and-genomics-futures/

NHS Genomic AI Network (2024) Public Perspectives on the use of AI in genomic medicine https://genomicainetwork.nhs.uk/wp-content/uploads/2025/04/AI-and-Genomics-Report-Final-1-compressed.pdf

Payment for Involvement Playbook https://thesocialchangeagency.org/resources/payment-for-involvement-playbook/

Example of compensation guidelines for patient partners in research https://cihr-irsc.gc.ca/e/53261.html

Roles for patient advocates with lived experience

EU Patient Engagement Resource Centre for Translational Research: step by step guidance and tools for researchers developing medicines (but interesting for advocates too): Patient Engagement Resource Centre – Involve Patients in all stages of your research

Co-production: a kind revolution – Research Engagement and Involvement Journal article (2022) about the conditions necessary for co-production in health research, and some reference to the challenges that need to be overcome for patient partners and university academics to achieve this (in the UK) https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-022-00340-2

(EU) PARADIGM Patient Engagement Toolbox (for research leading to drug development): https://imi-paradigm.eu/petoolbox/

Research Involvement and Engagement journal (worldwide): https://researchinvolvement.biomedcentral.com/