Patient involvement – why it matters

It is really encouraging to see just how much the voice of patients is becoming embedded within the sight loss sector. Recently, I spoke at a great event hosted by the Medical School at the University of Birmingham which focussed on how the patient voice can transform ophthalmic care and research. The event was attended by many patient organisations in our sector who champion the views of people with a range of different eye diseases and conditions. I also recently attended the launch of Moorfields Eye Hospital’s new strategy and heard more about their commitment to “pioneering patient-centred care”. There are an increasing number of events where the sector is demonstrating how patient voice can best be heard and acted upon.

But for health related charities, listening and responding are the real challenge. Many talk about the importance of patient voice but how do we ensure that patient involvement is more than just a tick box exercise? How can patient voice be truly embedded?

The answer, as you can probably guess, isn’t simple or straightforward. There is no one size fits all. Charities need to develop their own model of what works best. Whether it stems from direct employment, representation on the Board or other groups or committees to being an ambassador, fundraiser or media spokesperson the patient voice can have influence at all levels, helping a charity keep a tight focus on what matters most to patients. For medical research charities only by asking the questions and listening can we ensure that we are targeting funding to the research that matters most to patients.

At Fight for Sight, we have recently published a new five year strategy – A Future Everyone Can See. Our approach is patient centric, solutions focussed and evidence based. We ensure that our work and decisions reflect the views of those with experience of sight loss. We do this in a range of ways but two aspects of the way we work are crucial. Building on our work with the James Lind Alliance and over 40 organisations to establish priorities for eye research (Sight Loss and Vision Priority Setting Partnership) we ensure that the research we fund is targeted at what matters most to those with experience of sight loss. In addition, our match-funding scheme enables us to work in partnership with patient organisations to jointly fund the research that matters most to patients. Earlier this month we announced match-funding partnerships with 10 other charities.

People ask whether patient centricity delivers. We only have to look at the progress being made towards a treatment for choroideremia to answer this question. Emma Salisbury’s son Tommy was diagnosed with choroideremia, a rare inherited eye disease, for which there is no treatment. Working with Fight for Sight to establish the Tommy Salisbury Choroideremia Fund (TSCF), the determination of Emma, her family and friends has been crucial in taking research forward. The TSCF has raised over £500k and its investment in early stage research has been a crucial catalyst. A Phase 3 trial of a potential gene therapy treatment for choroideremia is now planned and the TSCF funding has helped leverage over £70m of further funding to help take gene therapy treatments for inherited eye diseases to the clinic.

These are just some of the ways patients are helping maximise the impact of our work at Fight for Sight. But we are clear there is more to do. As the world of eye research continues to deliver new opportunities and hope, charities and organisations also need to act by reaching out, investing in innovation and putting patients firmly at the heart of what they do.