Patient insights for sustainable care (F5)

Now is the time to do the job…

…according to doctors AND cancer patients. The 5th forum at EHFG2018 addressed the sustainability and efficiency of cancer care from the perspective of the patients. From my non-medical point of view it seems to be obvious that the patients’ experience of their care is one of the most important determinants of quality care. We can go on and on about indicators, costs, the necessity of new gadgets, but if the patients get lost in the system, how can we say that we have “good” healthcare?

Kathy Oliver, Chair and Co-Director of the International Brain Tumour Alliance moderated this forum about patient insight and efficiency of healthcare. Her dedication to improving cancer care comes from an incredibly personal loss, and her passion for improving the care for all the other cancer patients.

As she says, “inefficiency is an aspect of cancer care that is not focused on what matters to patients” – and I couldn’t agree more. We don’t have to be diagnosed with cancer to imagine how much better it is, if our treatment includes something more than just the basic medically necessary care. Families go through a complex crisis, their lives are turned upside down. For example patients need to be treated, they might lose their jobs, have problems with transportation to the treatment clinics and can’t take care of their children. Additional support is absolutely necessary, and it can be provided.

We heard one beautiful idea to provide additional support. Being a patient safety expert in an Eastern block country, I’m aware of the need of cheap improvements, and this invention was such a pleasant surprise that I’d love to share it. A group of Swedish experts invented something to make radiotherapy less stressful for kids and their parents. A ball of yarn. Yep, you read it right. Cats love it – and apparently humans do too. They use it differently though. There’s no running involved. The yarn is supposed to make waiting times easier. One end of the yarn remains with the kid inside the therapy room, the other end goes out under the door, through the corridor to the waiting room, so that the parents can hold it – thus connecting the family together. Brilliant, cheap, easy – and definitely makes the otherwise terrible therapy less unbearable.

Such inventions – and maybe more “professional ones” – are necessary, because apparently, 20% of the total healthcare budget is wasted. Using it better will not only increase the efficiency, but could make things easier for the people involved.

According to the All.Can international patient survey, the 3 most important problems with cancer care as experienced by the patients are:

  • Delay with the initial diagnosis: they’re sent back and forth between doctors, not really knowing what’s going on… and the delay can cost lives.
  • Dealing with the psychological impact of cancer: there’s a lot to cope with along the cancer journey, and patients are often unable to access psychological help.
  • Dealing with side effects and running costs: losing jobs, hair, strength, having to travel to the treatment – all very difficult to cope with.

If you think about these and how long and challenging the cancer journey is, you can easily see why it’s a great and welcome idea to focus on what patients actually need – so that less money is wasted. Let’s hope that all the great ideas shared by the participants will reach the ears of the powerful decision makers.

Proof that we were there

Proof that others were there too

Patients’ experiences on the lack of psychological support

Let’s try to find new angles to solve oldproblems!

This Blog was written by the Young Gasteiner Cecilia Surjan

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