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Experiences shape our goals and our future: It’s time to open up

It can be easy to fall into the belief, or at least the unquestioned assumption, that the advancement of medical knowledge proceeds according to some kind of neutral, objective formula; that the problems which hurt the most people are given the most attention, that there is some kind of ideal form of healthiness that we all can agree on and aim for. That past mistakes and abuses are mitigated through improved regulation and oversight.

But even with the best of intentions, the histories and interests of people working in biomedical research and in healthcare can still influence which questions they find interesting and which challenges they feel most pressing. Biases slip in through assumptions or guesses. If a workforce is not diverse and representing a variety of experiences, problems arise which you might simply never think of, seeing as they have never happened to you or to anyone you know.

Biases run deeply throughout medical decision-making

Long-entrenched stereotypes contribute to a situation where women wait longer for pain treatment and are prescribed less pain medication than men, even in the late stages of cancer. Even though the majority of GPs are female, women’s pain is systemically undertreated. This is especially important in health conditions where the relative severity of pain is a key symptom; endometriosis, which is often dismissed as mere period pain, takes an average of 7.5 years to diagnose despite affecting one in 10 women of reproductive age.

Race plays a factor too. Black Americans are half as likely to be prescribed painkillers as white Americans, with different treatment partly due to false beliefs about biological differences between black and white bodies. For those suffering from sickle cell anaemia, where excruciating pain signals a sickle cell crisis, this leads to unnecessary agony and potential death.

Experience matters; it determines our priorities and goals, what information we pay the most attention to and whose suffering is considered the most urgent and important. When those who have held power for much of the history of biomedicine have had very similar experiences, their biases will shape what research goals and innovations are funded and supported. Sometimes this process occurs unwittingly and subtly but a history of deliberate exploitation and dismissal of marginalised people’s experiences cannot be ignored.

Nesta’s Health as a Social Movement report covered numerous examples of patient-led networks driving forward research that aligned with goals and needs arising from personal experiences of conditions. It presented examples of rare disease advocates, who saw a need for innovation in treatment development for rare, unprofitable illnesses, working to change market conditions with legislation that created incentives through tax breaks and IP protection. Another case study showed people living with AIDS organising their own networks of volunteer support and care while fighting to have their needs met and funding released for research in the face of prejudice and stigma from authorities who dismissed their suffering.

There is good reason to be optimistic about the future. Efforts to recruit more diverse populations into medical and scientific careers mean a wider variety of backgrounds and experiences will feed into the many small decisions which shape the direction of research and innovation.

This must be bolstered by meaningful engagement with people who have experience of health problems, and through efforts to maintain the value of lived experience in the face of data analysis technologies offering temptingly simple answers and funding pressures making opening up to new voices, perspectives and unsettling entrenched power structures seem like an unmanageable risk. In the long run, it is those with experience who have many of the answers, and their voices must be central as our healthcare system adapts to the challenges of the future.

Lydia Nicholas will be chairing two sessions at The Future of People Powered Health 2018 event on 2 May. Join the conversation on Twitter #peoplepoweredhealth

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Lydia Nicholas

Lydia Nicholas

Lydia Nicholas

Senior Researcher, Explorations

Lydia was a senior researcher in Nesta’s Explorations team, focusing on how minds, systems and technologies come together to perform better at complex challenges with particular focu...

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