Personalised medicine - the big questions

Hilary Burton

12 June 2013

The new cancer database launched today (see previous news), and reported in the Times will pull together clinical, pathological, imaging, treatment and outcome data for all NHS patients. The ultimate goal is to inform the way in which each individual case is dealt with, to ‘pave the way for highly personalised treatment’. In addition there are ambitions that it will advance research to put the NHS ‘at the forefront of cancer care for the next two decades’, transform the delivery of care by ‘exposing the weakest performers’, assist companies wanting to develop new drugs, help to transform the NHS from a sickness service to a health service (by strengthening prevention) and, of course, save money (by reducing trial and error in treatment and the cost of ineffective drugs).

 

But what do we mean by personalised care?  This is a question that the PHG Foundation has been examining closely over recent years as we consider the future for personalised medicine. Firstly, we believe that there is nothing new about ‘personalised medicine’. It is about making the most accurate diagnosis, understanding the patient’s physiological and personal make-up, as well as their personal choices and tailoring treatment accordingly. Secondly, except where the treatment is actually derived directly from a person’s own cells (for example some stem cell therapies or cancer vaccines), clinical management decisions are usually made on the basis of accumulated evidence about the response of populations or subpopulations of patients to different therapeutic regimes and so not strictly ‘personal’. Thirdly, and most recently, is the idea that personalised medicine refers to a lifetime of disease prevention and holistic care developed through longstanding relationships between individual and healthcare provider – perhaps the most truly novel concept.

 

Genomic science has enabled much of this to happen – for example, being able to diagnose molecular subsets of breast cancer which might respond to different therapies. As a parallel venture, developments in IT, bioinformatics, epidemiology and clinical informatics have enabled construction of major databases such as this cancer database and subsequent transformation of vast quantities of raw data into valuable information that is clinically useful or relevant for research - often both. Perhaps a third important enabling factor will be the increasing global use and acceptance to a great extent by the public of large-scale data collection by the public. However, although they generally seem to accept that Tesco will use such information to provide ‘the best shopping experience’, previously voiced concerns suggest that they may initially be more suspicious of the NHS using personal medical data to provide ‘the best healthcare’, though they may yet be persuaded as evidence of the direct benefits continues to emerge.

 

Personalised medicine is thus in many respects just good medical practice, but the ways in which this will be defined and enacted will become increasingly complex and costly. As one comment on the Times website put it: ‘This will not work out unless millions are spent to put additional troops on the ground and the infrastructure in place to act on all the information gathered’.

Clearly a lot is going on in the NHS and research community regarding personalised medicine. There are at least three ‘big picture’ questions that remain to be addressed. Firstly, how will the NHS provide such high quality services on a genuinely equitable basis across the country? Secondly, could this actually save money; if so, how; how much; and how will we know? Thirdly, could personalised preventative medicine become a reality, using individual data and knowledge from research to inform about risks of specific conditions, preventive options to reduce these risks, and how could this approach be made available to the population as a whole? To realise the full potential of genomic medicine, it will be necessary to address these questions, and to ensure that massive financial investments such as those put in place today are paralleled by commitments to the more mundane but crucial issue of implementation within health services.