As an NHS-led initiative, making anonymised patient data accessible to approved researchers, INSIGHT has been working to make sure patients know what happens to their data, how they can get involved, and why it matters.
In 1974, patient and public involvement and engagement (PPIE) formally became part of NHS operation through the establishment of Community Health Councils – giving communities a say in the provision of local services. [1]
Fifty years on, PPIE has become embedded across the NHS, and in the wider health research ecosystem, ensuring patients and the public have a voice in healthcare. Building on this legacy, and following the government’s 2022 Data Saves Lives strategy, INSIGHT launched Data Saves Sight in spring 2024.
A campaign in three parts, Data Saves Sight is focused on:
1. Transparency
2. Decision-making involving patients
3. Reaching diverse communities to reflect wider society.
The objective? To ensure patients at Moorfields know that their routinely collected data may be anonymised and used for medical research into new treatments and care pathways. Within this overarching purpose, we are highlighting how patient data is driving medical advances, and the choice that patients have to opt out through the NHS national data opt-out. We have also involved patients in deciding which researchers can be granted access to anonymised data through our Data Trust Advisory Board, alongside their ongoing involvement in shaping INSIGHT’s evolution.
Patient messaging for transparency
Over the past nine months, we have rolled out messaging to patients, both at the point of care and online. Data Saves Sight information is now visible on electronic display screens in many parts of the hospital at the main City Road site, as well as Stratford and Croydon. We plan to expand campaign exposure on even more display screens over the next year, coordinating with clinical delivery teams to help embed the message across the hospital at every location possible.
Our onsite messaging and social media activity points to a dedicated web page, DataSavesSight.com, which draws from Understanding Patient Data (UPD) and their library of existing resources to develop bespoke content explaining the patient data journey at Moorfields.
Friends of Moorfields has played a pivotal role in helping us to reach patients. Our Data Saves Sight leaflets are displayed at the Friends’ information hub, and the team have amplified our messaging on their social media channels and by word of mouth.
From left: Messaging on electronic display boards is located in patient waiting areas at Moorfields Eye Hospital. 'Your Data Saves Sight' leaflets are displayed at the Friends of Moorfields patient information hub within the entrance of Moorfields, City Road.
Together with Moorfields Eye Charity, Friends of Moorfields also made it possible for us to host our first stand-alone INSIGHT showcase in the dedicated exhibition space they jointly refurbished in the entrance hall of Moorfields. Here, we had the opportunity to explain what happens to routinely collected patient data, and how it may be used for healthcare research. INSIGHT Director Pearse Keane and our data scientists were on hand to explain some of the groundbreaking advances made possible through INSIGHT’s large-scale datasets.
Left: Patients attending the INSIGHT showcase event at Moorfields meet with Pearse Keane (at right). Right: Patient representative Libby Cooper; data scientist Robbert Struyven; PPIE lead Pratibha Veeramani; Sir Peng Khaw, Professor of Glaucoma and Ocular Healing at the UCL Institute of Ophthalmology and Consultant Ophthalmic Surgeon at Moorfields Eye Hospital.
Reaching diverse communities
In addition to making information as widely available as possible virtually and across the hospital, we discovered that interacting face-to-face with patients and public through external events yielded some of our most rewarding experiences this year.
We were grateful to have encouragement from Moorfields Lead Nurse for Research, Dr Roxanne Crosby-Nwaobi. Roxanne is also Honorary Clinical Associate Professor at UCL Institute of Ophthalmology and has won multiple awards for community eye health education.
Roxanne invited us to participate in two outreach events for the Gujarati community in London, and introduced us to longtime collaborators, Dr Hari Jayaram, Director of the Glaucoma Service at Moorfields Eye Hospital, and Subhash Suthar, a widely respected eye health educator.
The team enthusiastically embraced our mission of informing patients and the wider public about the use of routinely collected data for research.
Thanks to Roxanne, Hari and Subhash, INSIGHT presented to several hundred people from the Neasden Temple community. We shared examples of how patient data — anonymised and curated into useful datasets by INSIGHT — was helping researchers developing treatments and new care pathways for some of the most common sight-threatening eye conditions, such as Diabetic Retinopathy, glaucoma and Age-related Macular Degeneration. We also explained that patients had a choice and could opt-out if they preferred not to have their data used for health research.
The opportunity to present alongside clinicians helped to bring our message to life. Roxanne, Hari, and Subhash were addressing current treatments and care for sight-threatening conditions; INSIGHT was helping to lay the foundations for the treatments and care pathways of the future.
Eye health education outreach with the Neasden Temple community. Clockwise from top left: Moorfields Lead Nurse for Research, Roxanne Crosby-Nwaobi (far right), eye health educator Subhash Suthar (centre), and INSIGHT's Research Communications Lead Alex Black. Roxanne and Subhash address the audience. Presenting the Data Saves Sight message. Eye health and INSIGHT leaflets on display for patients to take home. Dr Hari Jayaram, Director of the Glaucoma Service at Moorfields. Roxanne and Subhash offer practical advice on caring for common eye conditions.
Collaborating with NIHR Moorfields Biomedical Research Centre (BRC) on a joint event at the Bloomsbury Festival in October gave us an opportunity to reach patients, clinicians, life sciences entrepreneurs and interested members of the public. The event took the form of a panel discussion on health data equity and included a cameo from our patient ambassador Elaine Manna, an avid champion of eye health data research. Elaine’s story underscored the pressing need for earlier disease detection for those most at risk of sight loss.
Scenes from the panel discussion on health data equity, held with NIHR Moorfields Biomedical Research Centre as part of the Bloomsbury Festival in London. The centre photo shows panellists (from left): Dr Siegfried Wagner, Dr Ariel Ong, Dr Brieuc Lehman and Professor Pearse Keane (far left), together with the panel chair Alex Black (3rd from right) and patient ambassador Elaine Manna (2nd from right).
As the panel members discussed the challenges of using health data to build medical artificial intelligence tools that work effectively on patients regardless of gender and ethnicity, they provoked a lively discourse with the audience on the meaning of diversity in data, what happens when the data used to train a machine learning model changes over time, and how will we know if a medical Artificial Intelligence (AI) model can be trusted.
We are now using these events to further measure and evaluate public knowledge and opinion about patient data being used for research through INSIGHT.
We asked, “How aware are you that routinely collected patient data may be used for research?”
Almost 25% of responders did not know that routinely collected patient data could be used for research purposes under UK legal frameworks [2]. We recognise the importance of continuing to expand our messaging to address this gap.
Encouragingly, 100 % of responders at our events said they supported the use of anonymised patient data for research through INSIGHT after learning about our work.
As we develop our schedule of PPIE events over the next year, we will continue to assess the perception of patients and members of the public, and build on this feedback to inform our engagement work.
Shared decision-making with patients
Patient benefit is the “North Star” of INSIGHT — the guiding principle that informs why we curate patient data and what types of research are done using that data. Involving patient representatives in decision making is therefore an essential part of everything we do.
Across our content development and outreach activity, we have been guided by INSIGHT’s patient representative group, which meets regularly to discuss, evaluate and contribute ideas on INSIGHT workstreams.
Representatives also participate in the Steering Group for INSIGHT, determining the future development of the Hub Programme and overseeing key activities and agreements between the current NHS partner Trusts - Moorfields and University Hospitals Birmingham.
Beyond our own PPIE representative group, Moorfields Patient Participation and Experience Committee (PPEC), whose membership includes patients and hospital staff, has provided an inclusive community in which we can share our work and receive input from a wide range of viewpoints.
Engagement across the hospital community and at external events, gave us the opportunity to recruit new patient representatives, broadening the diversity of our patient group - one of our objectives for the year.
We will soon be onboarding our new patient representatives and look forward to the different perspectives and experiences they will bring with them in shaping our evolution through 2025 and beyond.
For more information, please get in touch: enquiries@insight.hdrhub.org