“We need to ask more What matters to you ?
in addition to What’s the matter with you ?
– Institute for Health Care Improvement
“What matters most?” It is a question that may not get the attention it deserves in our busy lives. A serious diagnosis like cancer unveils the value of the question, and the value of the answer. What matters becomes even more important when time and energy is running out. What matters determines treatment decisions. It highlights the significance of understanding.
Helping people is, in our experience, an important driver for doctors. A major satisfier of this drive seems achieving patient trust and gratitude. Yet in the busy world of clinical care there are innumerable situations where what really matters to patients and their families, what really helps them, is not understood or addressed.
Yes scans reveal tumor size and location, and pathology tumor characteristics. However, an adequate understanding of “what matters” and “what’s going on” relies on doctor patient communication. Yet doctors lack time and knowledge about a patient’s daily life and preferences. And patients lack medical understanding and are wary to bother their doctors.
To help overcome these difficulties we have created Goings-On, a personalized monitor app for patients and their family members. In less than a minute a day they can keep track of how they are doing; both in what matters (goals) and what is the matter (symptoms). This helps to determine the right treatment options for patients and prevent burnout in family members (also known as informal caregivers).
Recent research reveals the potential benefits of monitoring in cancer. Basch and Denis asked patients to weekly rate 12 mostly physical symptoms in a mobile application. Temel addressed symptoms, coping, treatment goals and understanding in monthly consultations. All resulted in more adequate understanding and changes in treatments. This in turn lead to prolonged survival and better quality of life at likely less costs (less hospitalizations, CT-scans, and aggressive end of life treatment). Follow up research (Temel) revealed family members (carers) had less distress.
Goings-On is not a decision aid. Decision aids help patients choose either treatment A or treatment B. Goings-On reveals goals and symptoms to help determine the right treatment, which might also be treatment C or supportive care. Research shows one in two persons struggle with treatment preferences, yet all patients can elicit on average 3 to 4 things that matter to them.
We are currently testing the Goings-On iOS prototype. Initial testing with patients and low literates has lead to improvements in usability of the app. The adjusted prototype is now to be tested in a variety of cancer clinics, through a multi-center two month pilot study. In each clinic a doctor, nurse specialist, and via them three patients, are invited to participate. Goings-On has been selected by Utrechtinc and the eHealth Hub Lean Startup Academy.
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Goings-On is made in loving memory of Richard van den Heuvel (1971-2012). He lived to his greatest ability, a full life, despite his brain tumor. We hope Goings-On helps a multitude of patients achieve their version of full lives, and doctors and nurses patient’ gratitude that keeps the fire burning.