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Patients are why we do what we do

The critical need to improve patient outcomes and experiences is the urgent and only stimulus for medical research. Patients are why we do what we do. But the continual challenge to us, as research charities, is this: how do we ensure the scientific avenues we are exploring to reach these goals are the right ones, for today’s and tomorrow’s patients?

Last month’s inaugural Patients First conference was such a crucial gathering on this issue, bringing everyone involved in medical research together to discuss how we can truly – and practically – put patients at the heart of our approaches to research.

It was so encouraging to hear of the growing emphasis being placed on meaningful patient involvement in delivering progress. ‘Patient centricity’ may appear an elaborate buzzword for a seemingly simple idea, but in practice it’s such an important – and difficult – thing to get right.

Why is ‘patient centricity’ so crucial?

How could it not be? Breast Cancer Now’s defining aim is an ambitious one – to stop women dying from breast cancer – and we need to ensure every research step we take is grounded in the realities of those affected by this dreadful disease.

We exist solely to serve patients – to meet their needs, to improve their outcomes, to campaign for the issues that matter to them the most. We can only succeed if we take account of their views and interests, and we need to work out how to do this much better.

Given the technical nature of medical research, there are real challenges to achieving genuine patient-centric approaches. But herein also lies the opportunity, because in setting your strategy you need the voices of those more concerned with dealing with the issue than the scientific detail.

Ensuring – and increasing – real opportunities and mechanisms for patients to directly influence our decision-making is therefore essential. As a relatively young charity, we have by no means got this completely right yet, which is why conferences such as Patients’ First are so invaluable in providing space to share ideas and experiences with like-minded organisations.

What does patient-driven research look like for Breast Cancer Now?

An example lies in our recently-launched Catalyst Programme, which aims to bring together the world’s leading academics, pharmaceutical companies and other collaborators to pool resources and accelerate research progress on breast cancer.

It was vital to have two patient advocates on the programme’s grant committee, responsible for reviewing the research applications submitted and helping to define the remit and format of the funding we grant.

These advocates advise firstly on how relevant they feel each proposed research project is to the priorities and needs of those affected by breast cancer. Secondly, in reviewing and influencing the trial designs they are able to consider the practical issues that those living with the disease face and any possible barriers to patient participation.

Likewise, patient advocates on the Board of the Breast Cancer Now Tissue Bank have helped ensure that we fully consider exactly what patients will go through – in terms of feelings and experiences – at every stage when donating tissue.

But patient centricity is also as fundamental to the micro (improving local care services) of improving breast cancer outcomes as it is to the macro (developing research strategies).

To this end, our Service Pledge for Breast Cancer is, through engaging patients and hospital staff in collaborative working, helping local breast cancer services across the country to review their services and implement patient-centred improvements. As we attack breast cancer from every angle, patients must always be at the centre.

Putting patients at the heart of our vision

We recently began work to develop our next five-year strategy and in doing so launched the Big Breast Cancer Conversation.

This project has seen us talking to women across the UK, in their homes, about their breast cancer experience. We needed to firmly base – in evidence – our vision and plans on the views and needs not only of patients but of those at risk of the disease.

We wanted to build a map of what it’s like to live with breast cancer, and to work out how we fit into that. And to do so we had to stop asking patients questions and simply listen to their experiences and feelings. By remaining close to the needs, aspirations and views of patients, not only are we empowered but we remain focused on the right things.

For us, it’s been crucial to never allow ourselves to become complacent on this point, and my one piece of advice would be this: keep going back to your supporters and the patients you represent. Keep asking what they want, and need, and what issues are most important to them – and provide enough opportunity for this to meaningfully influence your strategy. There really is no such thing as too much insight here.