A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.
Roger Wilson, Cancer Patient, Member of Independent Cancer Patients Voice (ICPV), Member of use MY data
Quality of Life in Cancer Clinical Research
I took a random selection of 20 abstracts from ASCO 2016. None of them mentioned that quality of life had been researched in the study but looking up the detail held in clinicaltrials.gov it turns out that 16 of them did have a quality of life component in them. Whether that will be reported and in what level of detail is a different question. Experience suggests that it will be mentioned but that for the most part the detailed Quality of Life
These are the days of ‘big data’ in healthcare. Increasingly we are seeing databases linked, common standards being adopted to allow similar fields to be aggregated, and increasingly comparisons can be made between key outcomes. The first QoL in cancer study appears to have been in the 1970s. The first paper I could find which looked at developing a methodology dates from the 1980s. We now have a proliferation of methodologies dominated by the EuroQoL EQ-5D which gives the kind of generic background view which Health Technology Assessment ( HTA) processes demand. Unfortunately for cancer patients the EQ-5D is too crude to have any way of reporting the kind of detail which cancer patients want to know when making choices about treatment.
What do cancer patients need from quality of life data? I want the full picture of a proposed treatment in the context of the treatment pathway being followed. I want side effects information, how side effects are treated, and I want to know how patients feel when taking the treatment - in their own words, not those of some detached academic. I want to know about long-term side effects and what comes after if this treatment fails. The pathway is the key issue in terms of quality of life, its not about a moment in time, it is my life.
However there are no data covering the succession of treatments, assessing the interactions that can arise as side effects aggregate, and the challenge of describing treatment and quality of life as end-of-life approaches is avoided. All this when there is 30 years or more of patient data locked up in digital vaults.
A first step would be aggregating existing QoL data to derive a picture of each cancer pathway, modified as clinical standards evolve. It would provide a baseline for comparing new treatments.
A second step would be using one tool/methodology for all QoL in cancer research.
Agreeing that step when there are so many competing methodologies is likely to be difficult.
The third step would be requiring a relevant patient group to be the determinant of the measures to be adopted in each QoL study, small or large. Not easy to arrange but do-able.
A fourth step would be mandating full analysis and reporting of QoL data when it is
The cancer research community must take on this challenge. At stake is one of the binding factors of cancer care, trust between patient and doctor. Targeted therapy is an amazing development but we are journeying together into an unknown future built on that trust alone, unless we do something about it.
Roger Wilson, Cancer Patient