Lizzie Chadborne, MPH
Lead Researcher
​Lizzie Chadbourne, MPH, is an autistic, disabled, and chronically ill public health professional and researcher in Brooklyn, NY. Her work focuses on digital health products, chronic illness and disability, sexual and reproductive health, and the patient experience and is grounded in disability justice and reproductive justice. She is also a writer, abortion rights organizer, and abortion storyteller.
My Story
This is your About page. This space is a great opportunity to give a full background on who you are, what you do and what your site has to offer. Your users are genuinely interested in learning more about you, so don’t be afraid to share personal anecdotes to create a more friendly quality.
Dr Jo Davis
Project coordinator and assistant researcher
Jo Davis (PhD, University of Cambridge) is a disabled writer, 'expert patient' and campaigner for healthcare equality. She is published widely in top UK poetry magazines such as PN Review and The Rialto, and has won awards for her poems (Bridport Prize, Troubadour Prize), receiving praise from Raymond Antrobus for her depictions of 'everyday ableism'. Her pamphlet, Dry tomb (Against The Grain), seeks to make visible a life with invisible illness.
Jo used her training as a researcher to found and guide the successful campaign to reverse the decision to reject anti-CGRP migraine drugs for the NHS. She continues to work for more equitable access to care and apportioning of research, and to reduce systemic bias in healthcare.
My Story
This is your About page. This space is a great opportunity to give a full background on who you are, what you do and what your site has to offer. Your users are genuinely interested in learning more about you, so don’t be afraid to share personal anecdotes to create a more friendly quality.
Dr Cole Ayasse
Researcher
Cole Ayasse, PhD (he/they) is a transmasculine, autistic, disabled, and chronically ill health scientist and researcher. He has led research projects ranging from academic experimental studies to statistical and psychometric analysis of pharmaceutical clinical trial data. Their experience and training has been multidisciplinary and includes aspects of cognitive science, psychology, neuroscience, hearing sciences, and statistics and psychometrics. Most recently he has been working in patient-reported outcomes on trials in neurological disorders as well as in rare diseases and oncology. Cole believes that good research must not just acknowledge but center patients’ lived experiences. He believes strongly in diversity, equity, and inclusion (DEI) in society and in research, and that disability justice is an important aspect of DEI.
About our collaborative approach
Nothing about us without us (literally!)
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When the problem with research about us without us is ... it doesn't happen at all
Part of our mission is to mitigate gaps in research that can reasonably be considered the result of relative neglect. Our question is not in any way scientifically out of reach, but has remained unanswered because unstudied - and unfunded. Lizzie specialises in public health research of exactly the nature required for a project such as this, but it is her perspective as a patient and her concern as a disability justice activist, rather than support from an official body that has led her to kindly volunteer her expertise. Jo's background in research, and her detailed knowledge as an 'expert patient', allows her as a non-specialist in the field to work effectively as a 'supervisee' under Lizzie, where she is able to follow her skilled instruction and do the 'donkey-work' under her guidance.
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Accommodating needs accommodates perspectives
Everyone involved in this project is a patient themselves and, unlike most institutions, we recognise the need to organise things around chronic illness pacing needs. Research and medicine are both professions notorious for excluding people who can't reliably work long hours, and this by default excludes many skilled people who become chronically ill. This study's research question is one among many that chronic patients, and the chronic illness community, know is important and urgent, but that many official bodies, societies, grant-making organisations and research institutions don't even realise is a question. Our willingness as researchers to dedicate our time (measured in pretty scarce spoons) to this project voluntarily stems from our insight as patients into its worth, and highlights the value of patient-led research perspectives. Our model points towards the possibility of conducting other studies in a similar manner, although we would like to factor in the idea of in-community funding (after the manner of mutual aid) rather than depending on 'pro bono' researchers.