Lived Experience Informed Practice: an alternative to Evidence Based Practice
I’ll start off bluntly in true Autistic fashion: I don’t like Evidence Based Practice and I do not believe it is superior.
Evidence Based Practice is the integration of best research evidence, clinical expertise and the client’s circumstances, preferences and values and applying it to clinical decisions, practice and care. It’s about making sure that treatments, therapies, interventions, practices and clinical decisions are based on scientific evidence. As a disclaimer, I’m talking specifically about Evidence Based Practice when it comes to therapy, social work, psychology, psychiatry, speech therapy and the like.
I'm not a fan of Evidence Based Practice because research forms the foundation of practice and I don't believe in relying on research when research is often flawed, full of biases and replicates white supremacy, ableism, racism and more. There are a number of limitations when it comes to Evidence Based Practice and I want to briefly share a few of them.
Evidence Based Practice is fueled by capitalism.
Evidence based practice relies on evidence that is already there which doesn’t account for evidence that isn’t available yet or hasn’t been studied yet. This is because what gets researched and who gets researched all depends on who is funding the research.
Evidence Based Practice results in providers and clinicians prioritising research over lived experience.
There are so many examples and stories where individuals have been gaslighted, denied or treated horribly because providers and clinicians prioritise research over lived experience. Since research is viewed as the be-all-end-all when it comes to making decisions, lived experience is ignored or seen as inferior because research knows better. And this is a problem because research isn’t superior especially when research excludes lived experience and excludes communities.
Evidence based practice is hierarchical.
There’s an evidence hierarchy and this reinforces the silencing of lived experience by creating barriers to what research is seen as valid. While there are a few different versions of the evidence hierarchy, systematic reviews and randomised controlled trials (RCT) are usually always regarded as the best type of evidence.
RCTs are studies where one group of individuals receive an intervention while another group receives a different intervention or no intervention at all while systematic reviews are a well, review, of a bunch of research studies based on certain criteria. The problem is that systematic reviews are only as good as the research question and the available research so a lot of studies end up being excluded from systematic reviews because they may not meet the inclusion criteria. The problem with RCTs is that they are costly so they require financial support which means only certain research is funded. In addition to this, RCTs rely on controlling variables and this brings its own limitations and flaws. While there is research that is lived experience based, they are often given less value and weight because RCTs and systematic reviews are the gold standard.
Put simply, systematic reviews and RCTs are not always the best available evidence even though evidence based practice ranks them as such. As a result, many studies and research that may be more valuable or accurate are excluded or left out due to this hierarchy.
Evidence Based Practice excludes communities marginalised by society.
When capitalism controls what research is done as well as who is actually researched, certain communities remain excluded from research about them. If research doesn’t include certain communities, how on earth can something be best practice?
If research is conducted only on Autistic children, it isn’t best practice for Autistic adults.
If research is conducted only on white Autistic adults, it isn’t best practice for Autistic people of colour.
Evidence Based Practice continues to reinforce Western ways of knowing where scientific research is seen as superior. As a result,Indigenous and First Nations People’s knowledge and their way of knowing as well as any form of lived experience that exists outside of research are excluded from Evidence Based Practice. Just because it doesn’t exist within research doesn’t mean it doesn’t exist at all. Just because something isn’t confirmed through research doesn’t mean it isn’t true. We cannot deny how research has been used as a tool of oppression and marginalisation against so many communities.
In addition to this, the majority of research is conducted by individuals outside of the communities research is about. This means many researchers hold biases which end up reflected within research. This reinforces racism, ableism, sanism, transphobia and more. That’s not to say that there aren’t researchers with lived experience but they continue to be the minority; it’s something but it isn’t enough.
Until research is free from racism, ableism, sanism, transphobia and is truly led and designed by lived experience and the communities it is about, there will always be limitations. We genuinely need to think twice before placing evidence based research over lived experience and anecdotal evidence when research excludes communities, our stories, our experiences and our lived experience.
Lived Experience Informed Practice
We cannot rely solely on research so we must learn to also rely on and prioritise lived experience and what communities are saying. Since Evidence Based Practice doesn’t actually make room for this or prioritises this, we need a framework.
I believe that framework is Lived Experience Based Practice; a new process for making clinical decisions and supporting individuals. There are four components to Lived Experience Informed Practice.
Lived Experience
Just like Evidence Based Practice is based on research evidence, Lived Experience Informed Practice is based on lived experience. When it comes to Lived Experience Informed Practice, lived experience is the foundation of the practice and I believe this is an important distinction because EBP doesn’t necessarily prioritise lived experience that exists outside of research.
When making clinical decisions, supporting individuals and ensuring we are using best practices, we must listen and learn from individuals with lived experience as well as seek both training and resources by individuals with lived experience. This is where we ask what the impacted communities are saying because after all, research can take decades to repeat what the communities have been saying for years.
Research and Clinical Evidence
Lived Experience Informed Practice does not ignore or exclude research and clinical evidence when it comes to informing our practice. We can draw on research and clinical evidence to inform our decision making and practice but our decisions and practice isn’t solely based on research evidence. In addition to this, we do not rank evidence on whether it was systematically reviewed or an RCT, we rank evidence on whether it reflects lived experience and the community it is intended for.
We ask ourselves:
Who designed the questions the research is asking?
Who is answering the questions the research is asking?
Who is excluded from the research?
What is the research actually measuring?
Think of it this way. Evidence Based Practice and Lived Experience Practice are both a recipe and within the EBP recipe, research evidence is a crucial ingredient while lived experience is an optional ingredient; some people use it and many people do not. On the other hand, within LEIP, lived experience is a crucial ingredient while research evidence is a preferred yet optional ingredient.
Evidence Based Practice says that research evidence must be utilised but Lived Experience Informed Practice says that if the research evidence doesn't align with lived experience or reflect what the community is actually saying, we don't have to use research evidence. Put simply, lived experience is the evidence because we cannot expect research to study everything and represent the entirety of our lived experience and our different communities.
Client Values, Choices, Circumstances and Differences
Lived Experience Informed Practice doesn’t just consider, it prioritises the individual’s own differences, circumstances, choices and values when it comes to any form of decision making and informing what is actually best practice for someone. LEIP encourages us to ask who the research is for, who the research is about and who is the individual in front of us which is what brings us to the new pillar.
Intersectionality
Intersectionality is a crucial component of Lived Experience Informed Practice because most research is based on a small group of individuals where there is little consideration of other identities in regards to class, disability, gender, race and more. As a result, a lot of research evidence simply isn’t applicable for certain communities and groups and for many, it’s even harmful.
When we are supporting an individual and considering what is best practice, we must consider the individual in front of us. And we can only do this by recognising intersectionality and seeing the whole of the individual, not just one part of the individual. We must acknowledge and recognise each person’s multiple identities and how these identities impact their experiences.
I recognise this framework may not be perfect but I believe it’s a start. At least, a way for people to start challenging Evidence Based Practice and an opportunity to follow a new framework. I’ve doubt there are individuals who are already valuing lived experience over research evidence but there’s nothing wrong with putting a name to it and defining it. I want to finish this article with this:
Evidence Based Practice asks, what does the research say?
Lived Experience Informed Practice asks, what does lived experience and the community say?
I know which answer I would trust more. Do you?