One of the priorities of the STANDING together project is to ensure the voices of patients and the public inform all aspects of our research. We are supported by 16 Patient and Public Involvement and Engagement (PPIE) members who were recruited for their expeirence of health and social inequity. We meet quarterly to share and reflect upon their unique lived experiences and provide input on the findings of the project. Our PPIE committee is instrumental in ensuring the project outputs align with the needs of patients and public.
Not all PPIE members choose to be publicly acknowledged, but some of our committee are listed below.
Cyrus is a Chemical Engineering graduate from the University of Birmingham. In his spare time, he enjoys quality time with family and friends and also likes to travel, explore and learn about different places, people and culture. His Patient and Public Involvement and Engagement (PPIE) journey began in 2019 as part of the development of Standard Protocol Items: Recommendations for Interventional Trials – Artificial Intelligence (SPIRIT-AI) and Consolidated Standards of Reporting Trials – Artificial Intelligence (CONSORT-AI) reporting guidelines – for ensuring transparency and completeness of clinical trial reporting which involves AI intervention. Cyrus joined the STANdards for data Diversity, Inclusivity and Generalisability (STANDING) Together project to help develop guidelines, as a patient participant, to ensure adequacy in representing minority populations in health datasets used for AI intervention. He is particularly interested in how bias and error can be mitigated in these studies. He wants to contribute towards advancements in medical technologies that will be beneficial and of equal access to everyone.
Retirement has meant opportunity to take a larger part in promoting PPI in health research. While I do not have a job or role, I can indulge my interest in aspects of data in research, have been a member of an Ethics Committee for 11 years, and also of a funding panel, in addition to contributing to many research studies. These have been rich and rewarding experiences, which sometimes have the added excitement of being controversial.
Cassandra H. Leung
As an intersectional minority working in technology, the topic of data diversity in healthcare and AI is of great interest to me. With experience of healthcare systems in both the UK and Germany, I hope to add to the wide range of contributions to the STANDING Together project. Discussions with other members have already proved extremely interesting and valuable, and I'm grateful for the opportunity to help make progress, as part of the PPIE sub-committee.
Ben Hirschler, 65, lives in Kingston upon Thames and is a former journalist. He is married with two grown-up children. After writing about healthcare for many years as a journalist, he was keen to get involved in clinical research during the coronavirus pandemic and he took part in the Oxford/AstraZeneca vaccine trial at St George’s University Hospitals in 2020. This led to him becoming a Research Champion for the Clinical Research Network in South London and engaging in PPIE work.
I have been a PPI(E) for about 6 years, participating in several research studies, locally, regionally, and nationally. I am a strong advocate for inclusive health research - to mitigate the existing health inequities, strive, and work toward health equality for the benefit of everyone in our society.
It took the recent COVID-19 pandemic, for the healthcare industry to discover that the pulse oximetry that has been used for years was ineffective in measuring the blood concentration of minoritised people. Can we imagine the number of patients who died because of this differential inaccuracy of pulse oximetry by race or ethnicity among patients with COVID-19, and prior to it?
This is clear evidence of the lack of diversity in the data that was used to test the pulse oximetry before they were allowed into the market. Hence, the reason for the STANDING Together project - is to diminish and/or stop the biases in data use for Artificial Intelligence in the healthcare industry. Thus, lessening health inequities and fostering health equality.
Ola is a PhD candidate in the Department of Economics at the LSE. She holds an MSc in Economics from the LSE and a BS in Economics and a BA in International Studies from the University of Pennsylvania. Prior to her postgraduate studies, she spent 4 years working in economic policy and strategy consulting in the Middle East. She is passionate about challenging inequalities and has increasingly become interested in the potential that ethical artificial intelligence may have in creating a more equitable world. Through the STANDING Together project, she hopes to contribute to increasing the diversity of digital health data so that we can all live healthier, longer lives.
I am Solicitor, Chair in various sectors, MAT Trustee, Board - Non Executive Director. I am a Lay researcher, Public Contributor and Patient / Carer Associate Lecturer.
I saw good and bad healthcare and the reason why I am passionate to ensure the seldom heard voices are heard. I am passionate to improve healthcare through research.
I am a wife and mother and was awarded an OBE in housing & young people and a Honorary Doctorate from the University of Bradford.
My career background is in Mental Health so I have always advocated for people whose voices are seldom heard. Whilst doing voluntary work I was asked to be part of a Community Advisory Group for Research 4 years ago, and I haven't looked back.
I currently work as a Digital Programme Manager at NHS England. I have long held an interest in how technology and health intersect, and the interaction of technology with patients and clinicians. My dissertation project for my MBA explored how the NHS engages with AI, and I worked across the health programme during my time at the Alan Turing Institute.