Why are we waiting for Better Outcomes?

As part of my work on the Outcomes Based Pricing Initiative with CRUK and the GMHSC Partnership, I have participated in lots of conversations about the outcomes that are valued by patients. It will come as no surprise to other Patients/Advocates that the outcomes we discussed were always given to us by the people who wanted us to discuss them.

One of the outcomes that I personally believe should be very highly valued is the improvement of outcomes for other patients. I don’t think that I am alone in this. It is why I mostly welcome the presence of medical students when I am undergoing observations or procedures and it is why I am largely happy to participate in research projects of all kinds. It is why the lack of proper, routine, purposeful data collection is so shocking.

Ideally the best outcome possible, would be for my diagnosis to never happen to anyone else ever again. Failing that, I’d love future metastatic patients to be gifted better outcomes across all of the usual listed categories; overall survival, time to progression, quality of life, return to normal activities, fertility, impact on family and support network, emotional wellbeing, and short/long term treatment side effects, etc.

I have argued repeatedly that “Better Outcomes for Future Patients” (perhaps this should read “service improvement”?) should be listed as an outcome that is valued by patients. Doing so would make it clear that data collection and research are felt to be important by the patient community.

We are repeatedly let down by bad data collection. Medications are denied us due to lack of evidence. We are not told of innovative treatments and therapies because there is a lack of evidence to support them. Support networks and valuable complementary services continue to be underfunded with the excuse that the data just isn’t there to warrant them. Prioritising these improvements IS important to patients but sadly it’s not on the table for us to discuss.

This is the recently published research on the outcomes that patients value in reference to Outcomes Based Pricing Schemes;

https://link.springer.com/article/10.1007/s40271-020-00430-x

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