The toilet paper on your shoe

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Whether here in Australia or anywhere else I’ve traveled over the last decade to review and assist in the health care world, I’ve seen a growing desire to engage patients more in the design and delivery of care.  As I noted back in 2013:

[P]atient-driven care does not mean foregoing the expertise, judgement and experience of clinicians.  Nor does it suggest the abdication of their clinical responsibilities. But we must go beyond patient-centered care, in which the doctors and nurses decide what is best for the patient.  Patient-driven care, in contrast, is based on a partnership between the provider and the customer.

And, as my friend Danny Sands noted in a comment to that blog post:

Healthcare is a collaboration around the health of the patients. Consequently, I think this appreciation and understanding needs to go both ways. 

As we know participatory medicine is based upon mutual respect: the clinician respecting the self-knowledge, experience, and wisdom that the patient brings to the collaboration and the patient respecting the knowledge, clinical experience, wisdom, and technical skills that the clinician brings.

All of which brings us to a notable address delivered by Jen Morris at a Health Services and Policy Conference here in Melbourne earlier in December.  Jen is a patient perspectives consultant, advocate and researcher (@JenWords on Twitter.)  Here are some excerpts from a summary of the talk, called “Patient innovators: tapping the most underused resource in healthcare.”

[Morris] outlined a broad range of benefits arising from consumer engagement in healthcare. This includes introducing what she termed “constructive unease” into the culture, methods, processes and structures that comprise the healthcare system.

Morris argued that the healthcare system desperately needs an injection of what one might call “transformation by transparency.”

She described this as “a sense that learning about one’s faults – like having somebody quietly tap you on the shoulder and mention the toilet paper on your shoe – might be momentarily painful, but it is far more helpful in the long term. Because you can do something about it.”

Health services use many great initiatives, both compulsory and voluntary, to gather data on patient experience in an organised fashion, such as standardised patient experience questionnaires and surveys and clinical data on readmission rates and waiting times. While these are highly valuable, Morris argued that they are not sufficient.

She said that in healthcare, as in life, the worst kind of blind spot is the one you don’t realise you have, because then there is no hope of fixing it or even making an informed decision about whether to fix it.

This means that even health services that show real commitment to measuring patient experience, or care quality and safety will only really collect and analyse data on factors and patterns they are already looking for – the things that they think are important.

The result of this is that a health service’s greatest weakness becomes such not because of deliberate neglect of the issue, but because the issue has not even entered their scope of awareness, much less been pegged as something important.

One counter measure to this is to encourage freer-form patient input, released from the constraints of forms and random surveys and structured feedback schedules, as this can shine a light on the blind spots that health services don’t even realise they have.

Patients can make a unique contribution to healthcare safety because they are uniquely placed to observe risks in care. They can offer crucial clues and information on factors that contribute to clinical risk and adverse events, which might never otherwise come to light, and even come up with ideas about how to reduce them.

In particular, patients are best placed to provide perspectives on contributing factors leading to adverse events, such as those relating specifically to patient experiences. These may go unnoticed if investigations focus only on practitioner-centred issues, such as inadequate staffing or poor consultant handwriting.

Morris discussed a common approach to patient engagement whereby health services identify problems to solve and then seek consumer input on a specific solution they have already devised. She argued that this approach can miss much of the potential contribution consumers can make to service improvement.

Instead of ‘narrow’ consultation with consumers, Morris advised services to regularly ask the most open questions possible, such as:

How could our service be improved?

What is good about our service?

What could be better about our service?

What do you wish was different about our service?

If you could give one piece of advice to the service, what would it be?