When patients help bridge the knowledge gap in health research #clinicaltrials #whywedoresearch #PROMs

This week saw a great editorial by Angela Coulter in the British Medical Journal (BMJ) headlined ‘Measuring what matters to patients.’  The underlying story may be summed up as follows.

The effectiveness of the care or medicines you and I receive every day has been decided by measuring the things that health professionals and researchers have decided are important. Some of these ‘measures’ or ‘outcomes’ are also important to patients and carers. But not always.

Often patients will have other measures of effectiveness which are completely ignored – such as fatigue. For instance a new medicine might make them so tired that they are unable to work or do things they need to such as be a parent.  The overall result is that it has a negative impact on their quality of life and of those around them.

Angela Coulter looks at the welcome initiative by health ministers from Organisation for Economic Co-operation and Development (OECD) countries so that patients and doctors are on the same page when thinking about the effectiveness of treatments and care.  Angela highlights a number of key priorities for this work.

A study published this week – this time in JAMA Oncology – emphasises just how important patients could be in bridging the knowledge gaps around treatment effectiveness. In the study, participants in a cancer trial were invited to self-report adverse events alongside adverse event reporting that would normally be the sole responsibility of the clinicians.

The study found that patients were willing and reliable reporters of these events. Also that they reported more events than clinicians. Essentially doctors would seem to be missing or under-reporting things that matter to patients.  The implication being that not only might patient reporting in this way enable a more complete assessment of treatments to be made but they might be an early warning mechanism for problems that would not otherwise be picked up by doctors.

In an age when every aspect of medicines development is under pressure to be more efficient in delivering effective treatments, the potential benefits to health, wealth and wellbeing in harnessing patient power should not be lost on politicians, policy-makers and health care leaders.

If you want to learn more about this subject then please take a look at the excellent COMET initiative which is doing some great work in this area.

Declaration: I am on the patient advisory panel for COMET and on the patient advisory group of the BMJ.


One thought on “When patients help bridge the knowledge gap in health research #clinicaltrials #whywedoresearch #PROMs

  1. Pingback: Rare Disease Research – moving from Study Participant to Research Partner | hcldr

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