About
Meet the founder Ellie Dalby.
The origins
Over the years, I have worked with industry, academia, non-profit organisations and government bodies to develop research strategies and better incorporate patients and their lived experiences.
Across all of this work, I noticed something interesting. There was a genuine willingness to collaborate, but often uncertainty about where to start or what is permitted within legislation and codes. Organisations wanted meaningful patient and public involvement (PPI), but many lacked the confidence, structure or experience to build partnerships that worked well for everyone involved.
I saw the gap that needed filling—not for another 'consultancy by template', but for someone who could facilitate meaningful patient partnerships that were practical, collaborative and grounded in real-world experience.
Why I do this work
I've held different roles when it comes to healthcare research, so I've seen first hand the impact that genuine collaboration between them can have on projects.
In 2023 I went freelance as a researcher, then as a patient partnership consultant, in part to better manage my health conditions, but also to work with a wider range of stakeholders and organisations. I could see a shift towards more meaningful collaboration between the different players in healthcare, including patients, and I wanted to be part of this important work.
As a patient
In 2018 I became a patient when I was diagnosed with UCTD, and since then have gone on to be diagnosed with more connective tissue and autoimmune diseases.
I know what its like to have a difficult diagnosis journey, to experience friction in healthcare systems, and the particular challenges of having a rare disease.
I also know what its like to take part in research as a participate, and how absolutely vital patient involvement is to the success of projects.
Working with industry
I started my research career working with pharmaceutical companies agency side as part of Inizio. I therefore understand the pressures and uncertainties of the commercial market, and as a patient myself I take a particular interest in areas of GDPR and data compliance.
I have continued to work with pharmaceutical companies, and met some wonderful individuals and companies along the way who are serious about better patient involvement and engagement and committed to this change.
Working in academia
I also work in academic research, as a research associate and patient engagement lead for the Long Term Conditions Group at the University of Cambridge and University of East Anglia. Our works aims to improves the lives of those living with systemic autoimmune rheumatic diseases, and we are great proponents of meaningful patient partnership and mixed method approaches.
I have been fortunate to work on projects where the importance of patient and public involvement was genuinely understood. For many of the projects I've been involved in, collaboration and partnership-building has been thoughtful, productive and, at its best, organic.
Unfortunately, this still isn't the norm across healthcare and research. I regularly hear stories that are very different from my own experiences, where organisations want to involve patients but struggle to create partnerships that feel meaningful or sustainable.
So, why can't it be like that for everyone?
I firmly believe that, with the right attitude, the right expertise and the right approach, it can.
Successful patient partnerships can be established that meet shared aims, strengthens research and benefits everyone involved.
Having experienced first-hand the value that collaborative working with patients brings to research and innovation projects, I now help researchers, pharmaceutical companies and healthcare organisations build meaningful patient partnerships that lead to better research, better decisions and better outcomes.
Key Skills
Creativity
Compliance
Communication
Integrity
Tenacity
Empathy