In health, it is important to know what ‘normal’ values are for things – like cholesterol for example. We know that there is a range that your cholesterol should be in to be considered healthy or ‘normal’. If your cholesterol falls outside of this range than we know something needs to be done so that it returns to ‘normal’. In medicine the goal is to make sure you fit into the ‘normal’ box. If you fit in that box then you are an apparently healthy person.
Our whole health system and health outcomes are measured based on this premise of ‘normal’.
So what or more importantly ‘who’ is normal? Evidence collected in research is used to create the normal ranges that we use in health to figure out if you are normal or not. But who are the people that are involved in the research that contributes to the evidence? Overwhelmingly they are not of NZ decent and certainly not Māori or Pacific people.
The evidence we use to make decisions about what is normal in health (or more importantly to define you as abnormal) are based on the findings from people who were involved in research that wasn’t done here in NZ, that wasn’t with people who live in NZ and have potentially very different contexts in which they live.
Why does this matter? We are all in fact human are we not, and thus have pretty similar physiology? Should it matter that normal blood pressure ranges were developed based on evidence from european men when I am a Māori woman? Of course it matters. There is the issue of genetics as a starting point, but also and potentially more importantly, my sex, my gender, who I am, where I live, my culture and beliefs shape me and what I define as healthy. It makes very little sense that a bunch of data about european men can be used to define my ‘normal’ or ‘not normal’ status. Normal and not normal in medicine also has physcial parameters ie. its only about your body and its structure and workings. In my health world i believe that things beyond the physical (like my thoughts and emotions) have a dramatic impact on my health and whether i am normal at any given time. Medicine does not include my view of normal in its view of me.
Health is a relative condition lacking a universal definition. The way in which healthy individuals are defined is not standardized and the characteristics of a stated ‘healthy population’ in research may vary considerably. Yet in every aspect of health and health care we are constantly being defined as normal or not. The big picture discussion here is about data, specifically health data, and the assumptions we make when we use data to make decisions about individual people and their health.
Big data sets in health tell me the average value for something in a big population – lets look at cholesterol again. The average cholesterol of all the people in a population should be less than 4mmol/L so therefore under 4mmol/L is considered normal. But what if none of those people in that population are anything like me (other than being human). Should I be measured against them to be defined as normal? Why can’t they be measured against me? Because in my world I am normal. Whose world, whose population is the normal that others are measured against?
Research needs to engage with a more diverse population of people to ensure data and evidence is relevant to the people we are using the research to have impact with. Health professionals need to use the evidence base that is available and then apply a practical reality to the person they are supporting. How does this evidence apply to this particular person? It is well known that the majority of health data that created the evidence base we currently use was collected in men. Even if we were remain solely focussed on physical health this type of evidence doesn’t mean much for women who are physiologically and metabolically different to men.
As my colleague Dr Stacy Sims says perpetually “women are not small men”. Why do we use evidence from men to know what is ‘normal’ about women? Why do we use evidence from European populations to know what is ‘normal’ for Maori and Pacific people here in NZ? Because that is what is done, has always been done and how the system has worked since time began.
Anyone who uses data or evidence needs to be mindful of the data they are using when making assumptions about people. Be mindful of what is classifed as evidence.
Ask, whose evidence is this? Who therefore is the evidence relevant for? Challenge those who collect data for evidence to collect the right things from the right group of people to have impact. Consider what, beyond physical health data, can be defined as evidence to support decisions in a person’s health. If we collect and use data the way we have always done, we will get what we have always gotten. And for women, Maori, Pacific and minority ethnicities, children and youth, the elderly, anyone who is not ‘average’ - that is an evidence base that has little relevance to who we are and how we define health.