When Assumptions Can Be Dangerous
We no doubt make assumptions every day (there’s one). There aren’t enough hours in the day to always find out every single detail and know all the facts, so our brains work to fill in the gaps based on our past experiences and similar situations. A lot of the time our assumptions are incorrect and fortunately, they don’t cause too much damage, but sometimes they can be dangerous, especially when it comes to healthcare.
Assumptions about what patients need
In the healthcare field, it is not uncommon to learn of products and drugs being researched to solve an issue which pharma assume is a problem for patients. On release of the product or drug, it turns out that it doesn’t actually solve a problem that was a patient priority. This kind of inefficiency as a result of an assumption results in wasted time, money and resources. The worst part is, that more pressing issues for patients could have been resolved if patients had been involved earlier.
In 1992, a core set of measures were developed for rheumatoid arthritis (RA). They were core endpoints for symptom-modifying antirheumatic drugs in RA clinical trials. These measures were output from the first OMERACT (Outcome Measures in Rheumatology) conference where 92 rheumatologists, methodologists, drug regulatory officials, and pharmaceutical physicians from across the globe contributed to achieving consensus. A great achievement!
However, a decade later, when RA patients were invited to participate at the 2002 OMERACT conference for the first time, their involvement uncovered that
“A number of subjective experiences of RA are not encompassed within the current core set of outcome measures, but were identified by patients as important consequences of their disease.”1
It turned out the endpoints being measured did not include the main patient priorities but instead what the experts felt were most important.
As a result of the patient involvement, fatigue was included in the core set of endpoints.2 Since then pressure has continued to consider treatment outcomes in the wider context of life impact measures, clearly the perspective relevant to patients.3 Every year, OMERACT continue to involve patients in all conference activities to avoid similar assumptions being made about their disease in future.
Assuming that HCPs have all the answers
It is not uncommon for patients to assume that healthcare professionals will always have answers, solutions and that they won’t make mistakes. Of course, it is natural to think and hope for this in a time of need, but patients also need to be careful not to make assumptions – doctors are only humans too.
To reduce the chances of mistakes, or misunderstandings about the patient’s condition and to help HCPs reach conclusions quicker it is important for patients to provide a picture of their condition in as much detail as possible. In addition, if patients ask questions and seek clarification, they can better understand and learn how to support their own health. Building up this two-way communication helps form a partnership where collaborative solutions happen with both patient and doctor taking responsibility for the patient’s health and treatment. An enhanced relationship can also support increased patient health literacy.
Assuming Health Literacy
It is commonly reported that patients do not understand much of the medical jargon and information they are presented with at their doctor’s surgery.4 In addition, we know that only a small proportion of medical information (that is understood) is retained. These health literacy challenges are amplified further for the many patients in the UK for whom English if not their first language. These factors combined can lead to confusion and a feeling of being out of control for the patient.
Assuming that medical information is understood and retained by patients is also potentially dangerous. Incomplete or misunderstood medical information can lead to a number of negative implications including treatment non-adherence and a lack of engagement with the disease. Both of which can lead to poor patient outcomes.
Clinical Picture Assumptions
Reports have shown that assumptions are too often used and quick judgements made when it comes to patient diagnosis.5 Naturally, assumptions are based on learned knowledge, evidence-based information often described as ’the clinical picture’. When assumptions are an accurate reflection of reality there is a chance the treatment will be effective. However, if assumptions are incorrect the best possible outcome is that the disease is untreated, and at worst, harm can be done.6
In December 2013, it was recognised that the gynecological specialty worldwide was assuming that tumours of the uterus, known as fibroids or leiomyomas, were non-cancerous or benign. This ‘assumption of benignity’ had led to the development of a widely used, high revenue and well-marketed surgical methodology practised on 50,000-100,000 American women with uterine fibroids each year. The practice is known as ‘power morcellation’ minces up uterine tumours to get the enlarged tissue out of small ‘minimally invasive’ skin incisions.
The ‘assumption of benignity’ about uterine fibroids covered over two-decades and was a major mistake. Patients' have their hidden cancers morcellated which led to their spread (or upstaging). This totally avoidable complication significantly worsened these patients’ prognoses and caused many premature or unnecessary deaths.7
While assumptions can give us an easy answer, the problem is that they stand in the way of learning. If we learn, we can better understand and importantly, make progress. Learning leads to adapting of existing perspectives, instead of simply getting stuck in old thoughts and ideas and following them blindly.
At Cuttsy+Cuttsy we recognise the danger of making assumptions and recognise the value of what we can learn by asking the right questions and actively listening to help understand from another perspective. The insights we uncover help us to develop communications that resonate with our audiences.
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1. Kirwan J, Heiberg T, Hewlett S, et al. Outcomes from the Patient Perspective workshop at OMERACT 6. J Rheumatol. 2003;30:868-872.
2. Kirwan J, Minnock P, Adebajo A, et al. Patient Perspective Workshop: Fatigue as a recommended patient-centred outcome measure in rheumatoid arthritis. J Rheumatol. 2007;34:1174-1177.
3. Kirwan J, Newman S, Tugwell P, et al. Progress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of Life Impact Measures at OMERACT 9. J Rheumatol. 2009;36:2071-2076.