The recent three-part ‘From Data to Impact’ webinar series hosted by use MY data was much more than three separate online sessions. Each webinar built on the one before it, creating a shared journey of learning, discussion and continuous improvement.
Across the series, we explored some of the most important questions surrounding patient data, including trust, transparency, meaningful patient involvement, organisational culture and how we measure genuine impact. Although each webinar had its own focus, one message remained consistent throughout: using patient data successfully is not only about systems, technology or numbers. It is also about relationships and ensuring that patients remain central to the decisions being made.
One of the most positive aspects of the series was how feedback from webinar attendees directly shaped what happened next.
Following the first webinar, attendees told us that they wanted more opportunities to discuss the subjects and share their own experiences. We responded by introducing breakout groups during the second webinar. These discussions allowed delegates to move beyond simply listening and become active contributors, comparing approaches, raising challenges and learning from one another.
The feedback after the second webinar was equally valuable, attendees wanted more time for those conversations. The third webinar therefore gave delegates a greater opportunity for discussion, reflection and collaboration. In many ways, it became the culmination of the entire series, and that final piece of the jigsaw that brought together the content, learning and experiences from the previous sessions.
For me personally, the series was also a valuable opportunity to work more closely with the other members of Flatiron’s Patient Voices Panel (PVP).
As someone still relatively new to the PVP, I had experienced the onboarding process and regular meetings. However, working together towards a clear, shared purpose, felt different… it gave us a practical opportunity to collaborate, contribute and build momentum as a group.
We planned, organised and developed the webinars together, with each person contributing where they could and playing to their own strengths. At times, it felt like being part of a relay team! One person would take the lead before passing the baton to someone else. At other moments, it felt like a tag team, with people stepping forward to support one another whenever needed.
There was also space for our individual personalities to come through. The occasional moments of humour helped the sessions feel natural, welcoming and human. It was enjoyable to work together, rely on one another and see how the different contributions came together to create something stronger.
The webinars also demonstrated why both quantitative and qualitative evidence matter. Figures such as trust scores, consent rates and participation levels can tell us what is happening. However, patient feedback, focus groups, personal experiences and open conversations help us understand why it is happening. We need both if we are to measure meaningful changes in trust, transparency, culture and patient involvement.
“What stood out across all three webinars was the consistency of the contributions. Patients, advocates, researchers, doctors, healthcare professionals and organisations such as useMYdata and Flatiron may approach these subjects from different perspectives, but there was a strong sense that we are all working towards the same goals.“
We want research to improve the patient journey and lead to better outcomes. We also want patients, the NHS and the wider public to receive a fair and visible benefit when patient data creates value.
Patients do not contribute their time and experiences simply to tick a box or allow an organisation to say that patient involvement has taken place. They contribute because they want to make a genuine difference. They want to help improve research, treatments and the patient journey, not only for themselves, but for others who may face similar experiences in the future.
I believe, we in general, need to become better at communicating the impact of those contributions. Patient data and research involvement may be anonymised and confidential, but that should not prevent us from showing patients the difference they have helped to make.
When treatments improve, waiting times are reduced, research becomes more relevant or the experience of future patients changes for the better, we should communicate that clearly. We should be able to say:
“This happened because patients like you contributed, shared their experiences and allowed their data to be used. Thank you… and here is the difference it made!”
For many patients, that acknowledgement is enough. They simply want to know that their contribution mattered.
The series was both reassuring and motivating. It confirmed that we are on the right path, while also encouraging us to continue learning, measuring and improving.
The final webinar may have completed this particular series, but the conversations, collaboration and opportunities to create meaningful change will continue!
Curious about how patients are helping shape the future of health data and research? Check out more panel session discussions from the Flatiron Patient Voices Panel below:
🎥Part 2 - From data to impact: Impact on people & culture. From theory to practice
Explore the full Flatiron Patient Voices Playlist on the use MY data YouTube channel!
