How are applications of “patient experience” and “lived-experience” different, and why does it matter?
This piece was originally published on my LinkedIn.
Over the last few years there’s been a rise in vocal acknowledgement of the importance of the “patience experience” of service delivery in health. It’s a priority that now appears on nearly every major government and private organisations public strategic agenda - being formalised by the creation of new roles, teams, workflows, and allocations of funding to support organisational integration and realising outcomes.
In the same span of time, the concept and application of "lived-experience" driven reform and innovation in health has entered it’s infancy also. Shared decision-making with people whose personal experiences of health contexts offers a level of insight - insight that is impossible to replicate to the same degree of nuance and fluency in any course text - paired with professional competency and applied tangibly to service design and delivery.
There is, however, one key distinction between these two methods of embracing and empowering lived-experience to practically affect the ways we make change in our health systems that is not well understood, and as a result has been applied poorly in reform methods of organisational governance and identifying the methods best employed to achieve strategic priorities.
This distinction is the tense, past and present, of lived-experience and how the confusion and misapplication of each dramatically alters the principles, tools, and outcomes of any attempt to leverage lived-experience to improve design and delivery. Let’s briefly examine the context, function, and application of each in order to better understand why exactly there is a need to allay this confusion.
Patient experience is fundamentally an exercise in gathering qualitative and quantitative data on the outcomes, clinical and experiential of health consumers engaging with a point of care - or more specifically, health consumers and patients who have already engaged with a point of care.
In this context, the collection of that data happens post-event, and is therefore retrospective. The experience of the patient has already happened, and cannot be retroactively changed. The function, however, of using that data that has been gathered is to improve, adjust, and reform existing care provision so that future patients interacting with the same points of care enjoy improved clinical and experiential outcomes.
The application of tools for measuring patient experiences is the point at which a significant distinction between patient experience and lived-experience engagement is created.
Measuring patient experience is a past tense metric, capable only of gathering information from events and experiences which have already occurred. Whilst this data can then be used to inform future decision-making and service design, the data itself is not an active voice of lived-experience - but rather a past echo of lived-experience captured in metrics deemed relevant by those employing data gathering tools like surveys, observations of patient habits and behaviors, consultations, or independently submitted feedback.
What information that gets collected and passed on to inform decision-making is only as reliable, intuitive, and lacking in bias to the extent that the tools used to collect them have had invested in them by people.
Engagement with lived-experience to drive decision-making is an entirely different undertaking in itself. Whilst that engagement may draw on previous patient-experience measures, the lens through which existing information is applied is one grounded in an active and insightful present experience of point of care interaction and broader systemic experiences.
This engagement plays a far more active role in impacting decision-making, and is in itself a far more meaningful form of engagement. Present experiential input is far more impactful for large scale decision-making on strategic reform and innovation of health, allowing the perspective of lived-experience to view the entirety of the health system from the top down.
Unfortunately, whilst undoubtedly a highly valuable asset to executive decision-making, people with lived-experiences of disability and chronic illness are rarely afforded the opportunity to occupy executive positions - with organisations instead seeking their feedback in a consultative capacity, greatly narrowing the usefulness of insight gathered in practical application.
Establishing dedicated workflows and positions to collect and distill patient experiences in health organisations plays an important role in contributing to the evidence base for informing change and transformation - but actually embedding present tense leaders with lived-experience of disability and chronic illness in executive and leadership positions in organisations is the only way to meaningfully and genuinely impact current and future decision-making in health service design and delivery.
In brief, the tool set of patient experience workflows are almost always consultative. Acknowledging the separation of patient experience research from lived-experience driven decision-making is crucial to our path forward. Lived-experience decision-making employs tool sets that are foundational comprised of components and principles of co-design and co-production in the decision-making process.
Many health organisations at current have, to their credit, established branches dedicated to the patient experience of the systems and services they administer. However, without the active elevation of lived-experience leaders to positions of decision-making, we will continue to proclaim we are making decisions about the future based on shared decision-making - when in reality those decisions will only be a product of consultation, and not genuine and meaningful engagement with lived-experience.
A patient’s experience is the outcome of a point of care interaction. Lived-experience is what drives decision-making of the design and delivery of those points of care. The difference in wording is subtle, but the outcomes of their endorsement and application will most likely decide whether or not your organisation's statements and strategic priorities on meaningful engagement with lived-experiences can actually be applied in practice.
If the above understanding of "patient experience" has come to define your active engagement then it's more than likely you are enshrining a practice which is really just consultation, and regularly make efforts to affirm decisions which have already been made without actual "lived-experience" engagement.
As I, and others in this space have said often, consultation is not co-design. It follows that if your sights are set on meaningfully engaging with lived-experience, but you're packing a tool set made for assessing patient-experience - you are one of many who has misunderstood how significant a divergence in application exists between these two similarly worded methods of creating lived-experience driven change in health.
I encourage you to keep that distinction in mind next time you're trying to decide what your engagement goals are, and how you intend to set about achieving them in practice.