Using patient-reported outcomes in clinical practice: moving from why to how

Prof Jane Speight’s TED talk at the Baker Institute’s National Diabetes Forum


On a sunny Spring Sunday in Melbourne a couple of weeks ago, Prof Jane Speight presented a ‘TED talk‘ to around 100 endocrinologists and GPs, at the 2nd National Diabetes Forum hosted by Baker Heart and Diabetes Institute.

For those of you unfamiliar with the global TED initiative, it brings together Technology, Entertainment and Design. The rules of a TED talk are simple – bring an ‘idea worth spreading’, use graphics (but not detailed charts or tables), add some design flair and engage your audience in a short, powerful talk. We recommend checking TED out here.

Jane presented about using patient-reported outcomes (i.e. questionnaires) in clinical practice; we summarise below.

So, why use patient-reported outcomes in clinical practice?

We know that at least half of people with diabetes are not achieving the clinical targets that would reduce their risk of long-term complications. The traditional biomedical model is not working. Research focuses on the development of new treatments and technologies. About 50% of medications are not taken as recommended, and yet we prescribe more and more treatments.

We have high expectations of biomedical screening and monitoring – they provide huge amounts of important data about risk and we collect more and more – but these data leave us with the illusion that we know everything. If we rely on biomedical data alone, there is a good chance we will miss something important.

Clinicians and researchers often talk about ‘diabetics’, with little appreciation of what life is like living with diabetes. If we step back one moment and focus on the person with diabetes, it becomes easier to realise that other priorities can interfere with their diabetes management. For example, clinicians apply algorithms for treatment intensification, but these rarely take into account the person’s concerns or preferences about those medications.

How to do it?

We know that 1 in 3 people with diabetes want to talk with their clinicians about how they feel about managing their diabetes and we have the tools to facilitate those conversations – brief questionnaires assessing satisfaction, well-being, frustrations and concerns.

We also know that communication is a problem – people with diabetes feel that clinicians often judge them for having a ‘poor HbA1c’, ‘too many hypos’, or for being ‘non-compliant’. Many clinicians want to have meaningful conversations with people with diabetes but experience barriers, such as lack of time, resources, skills and confidence. But tools designed to overcome many of these barriers now exist. For example, the NDSS Diabetes and Emotional Health handbook and toolkit and the T1D Consultation Tool.

Using such tools can improve outcomes and the clinicians applying them are winning awards for innovative healthcare. So, Jane argued, in the age of disruption (Uber, AirBnB etc), it is no longer acceptable to put things in the ‘too hard’ basket. Clinicians can and should embrace this paradigm shift so that using patient-reported outcomes in clinical practice is not seen as a problem but as part of the solution.

Jane’s TED talk was videoed and will be available online for anyone who attended the National Diabetes Forum.