I heart evidence based medicine. I do. But – as an advocate for evidence based medicine – how do I make decisions about my health when there is so little evidence, and the evidence that does exist is – due to the nature of there being so little – conflicting?
A diagnosis of a borderline ovarian tumour (BOT) is a good example of a diagnosis that is associated with conflicting “best practice” guidelines. The biology of these tumours remains uncertain: are they pre-cursors to typical ovarian cancer, or not? I’ve written previously about the absolute confusion that I continue to cycle within when it comes to trying to make a rational, informed decision about my BOT diagnosis. If I’m honest, I didn’t really have much of a decision to make (clinically, the treatment path was clear) BUT I want to understand and own my diagnosis. I’m sure that this is true of all of us, regardless of the diagnosis in question.
I’m also a control freak of epic proportions and my brain works in such a way that requires I clearly understand how A leads to B, to C and the ways in which D, E and F may (or may not) be part of a pathway to X, Y and Z. I also need to know how factors 1, 2 and 3 may alter and affect those pathways, with the potential for outcomes X" or Y". Those who know me, know this. It means that I’m not comfortable with “accepting” advice or opinion – no matter how well qualified and revered the person giving the advice or opinion is (and I know I’m not alone here). I need to understand HOW and WHY and be clear on all the associated what-ifs, maybes, and what-nots. Borderline ADD, perhaps?
Add into this already frustrating (and exhausting) mix that in my day-job I’m a public health researcher, one with a hobby-scientist leaning (my undergrad was in genetics) and a day-to-day focus on (in)equity in health, health systems, access to health, and an implicit engagement with the ways in which the academy and all knowledge-producers do (and do not) engage with their intended beneficiaries (so to speak), and (often) fail to translate knowledge appropriately. This leads to persistent frustrations about how those producing knowledge do – and do not – work with and involve those whom they aim to benefit (something I focus on in my day-job). They say that doctors make the worst patients; I’m guessing that something similar can be said about academics being the worst [insert descriptor of choice here].
So how should decisions be made, in an informed fashion, when the evidence is limited? How can an uptight academic comfortably own her own medical diagnosis?
One answer: the Cochrane Collaboration. I’ve previously written about the helpful review on BOTs produced by the Collaboration.
But the evidence that the Cochrane has to hand is limited…..
I have found asking others – other ladies with a BOT diagnosis, medically-qualified friends, my treatment team – central to keeping myself sane. It’s reassuring that everyone I speak to and engage with is also confused and conflicted (some more than others, some less so, some are just very good at sounding convinced). Medical experts themselves indicate that the available evidence IS limited but are clear in how they have made sense of what is available.
From these (online and in-person) conversations, and my ongoing literature and clinical guideline reviews, I’ve managed to weave my own narrative; my own BOT trajectory, if you will. I’ve developed a clear(er) understanding of my diagnosis, and of what I can expect moving forward. I am acutely aware of the ways in which medical research and evidence are (not) translated effectively (now even more acutely than I was prior to my diagnosis); there are some excellent examples of well-developed fact sheets and patient guidelines. However, other research I have read is definitely not incorporated into existing patient guidelines.
Without having really thought about it, I’ve been applying what I’m familiar with in terms of a research process. I feel most at ease when I can figure out where I sit in this whole journey, and own the ways I’m obtaining, analysing and utilising the multiple forms of data I’m accessing. This includes a reflection on what I cannot access and/or understand.
I’ve always been a fan of a mixed-methods approach to exploring complex problems. I just hadn’t previously considered autoethnography* as a method I’d engage with.
Perhaps I now need to add my anthro friends and colleagues into this journey…….. and take a crash-course in autoethnographic methods.
xx
jozi-ovari 