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How do we answer the questions that matter to patients ?

Amsterdam, International Quality Forum 2018, 2nd of May: The question above was the challenge that we were given for a panel discussion at the International Improvement Science and Research Forum. On the panel: Simon Denegri, National Director for Patients and the Public in Research at the NIHR, Sara Riggare, a self care expert from the Karolinska Institute and myself as a jobbing clinician.

Simon Denegri illustrated how the National Institute for Health Research (NIHR) is now involving patients at every step of research from selection of topics, preparation of protocols, evaluation of outcomes and publication.

Sara has Parkinson’s disease and gave compelling evidence how patients can themselves create, collect and analyse data to answer the questions that matter to them. Her website is full of thoughtful insights and real encouragement for others struggling with the same problems. Watch her training on a trampoline or boxing her way to better health on her own youtube channel and you start to get a feeling how patients could be become the pivotal force for change.

I am inclined to think she is right. As patients are presenting with increasingly complex conditions and diverse preferences it would seem to me that clinicians like myself can try to explain some of the data but that only patients can prioritise how to use that data to get to meaningful answers to their questions. Increasingly I see answers to what matters to patients involve those who matter to our patients and those to whom our patients matter: Patients with memory problems or acute confusion rely on those around them to support their narrative.

In acute care we are facing additional challenges: acute and life threatening diseases can change the questions that matter within minutes: I recently looked after an elderly gentlemen who had seen his primary care doctor to get a certificate for racing cars. He had developed serious electrolyte abnormalities that at least temporarily made him very vulnerable and at high risk of catastrophic deterioration. What mattered to him when he saw his primary care doctor was very different to what mattered four hours later when he was confronted with a potentially life-threatening condition.

The question ‘What matters?’ is therefore fluid and often transient and so will be the answers to this question.

The call to put ‘What matters’ at the heart of care and policy is not new: In 2016 the Institute for Healthcare Improvements President Emerita Maureen Bisognano asked the attendants of the Gothenburg Forum on Quality and Safety in Healthcare to ‘ask patients  “What matters to you?” rather than “What’s the matter?”’ in order to reframe interaction with patients. Unfortunately many measures that were meant to focus care around those who matter: the patient. More often than not the measures turned out to meaningless and distracted from delivering better care.

Just in case you want to get more involved in 2018 the ‘What matters to you?’  day is the 9th of June. Led by NHS Scotland and supported by NHS England is trying to put this questions centre stage. Arguably it will need a stronger change in organisational structures and hierarchies to get real improvements in the way in the way that we answer the questions that matter.

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