By Joshua Symons, Director of the Institute of Global Health Innovation’s Big Data Analytical Unit
Patient data is precious. It’s a resource that many researchers and clinicians use to improve healthcare and therefore the lives of patients and health professionals. That’s why we want to make sure it’s used in a way that’s both effective and safe.
So, on the 19th of March 2019, we were very excited to host the first patient and public involvement workshop of our project, SAPPHIRE – Safe Access for Personal Patient Healthcare Information and Records Environment. We know that the knowledge and expertise of patients and the public are invaluable in healthcare research, because these are the people who will ultimately benefit from it. This meeting helped us tap into this important resource, allowing us to work directly with Imperial’s Patient Safety Translational Research Centre (PSTRC) Research Partners Group (RPG), and current users of Patients Know Best (PKB), to co-design the funding application for the next phase of this innovative programme of research.
What is SAPPHIRE?
SAPPHIRE is a partnership between patients, industry and academia. We want to create a sustainable information resource and leverage the latest technology to ensure the effective use of patient data. SAPPHIRE is not a data collection programme but a platform to help get the most out of existing data.
Who is involved in the work?
SAPPHIRE is a partnership between Imperial College London, patients, and two other organisations: PKB and MDClone. PKB is an established personal health record provider which integrates data from care providers with data entered by patients into one platform. MDClone is a world-leading synthetic data generation platform. Together this partnership will enable the use of patient data in a safe and effective way for healthcare research. It will also empower patients to contribute their data with consent, and to be involved in the design and evaluation of research questions. And ultimately that will mean this precious data can lead to quicker insights and improvements in care.
What’s synthetic data?
Synthetic data is like a lab-grown gem. It’s very similar to the real thing and is based on actual ‘natural’ data, but it contains no real people and it’s completely anonymised.
What was the purpose of the SAPPHIRE workshop?
We held the workshop to enable direct patient co-design of the SAPPHIRE proposal for the next stage of work (stage 2), which we’ve submitted to Wellcome. Both PKB and non-PKB patients attended this workshop and helped design the materials. This shaped the final proposal which was also fed back to patients several times for review before submission. If SAPPHIRE is awarded Wellcome funding, we’ll hold further workshops with patients to ensure co-design of actual research in the same manner.
What did patients say?
Some of the great patient support we’ve received includes:
“We support this project and agree it will be very worthwhile and has huge potential for future healthcare research.”
“Mr Joshua Symons’ feedback in response to our individual suggestions was excellent and we are using this as a model of good practice to help capture the impact of our comments and how researchers use them.”
Where can I get more information?
Please see the SAPPHIRE Pamphlet and SAPPHIRE Data Privacy Notice. Our patient partners co-designed these materials and we are grateful for their on-going input. You can also contact Joshua Symons for more information at firstname.lastname@example.org.