What is the cost of Personalised Medicine?

The NHS has often been described as Stone Age in its adoption of technology, and whilst I  wouldn’t be that harsh, it’s not far off. It’s certainly lagged behind the entire time I’ve been in the NHS (which is since my birth), but at times it has flirted with coming up to date. I’d heard rumours that we’re giving it another try, but having recently been at a talk from one of the NHS innovation leads which sounded more like he was reading from a Silicon Valley bingo card, I’ve not been entirely full of hope.
After today, I’m feeling optimistic.
Dr Steve Laitner (@stevelaitner), GP and Freelance Health Consultant and someone I’ve conversed with many times over Twitter, was kind enough to invite me to attend a meeting on ‘High Value Personalised Medicine in the NHS – now and the future‘. Personalised medicine is another buzz phrase (a box on the bingo card if you will) which is slightly hard to define. I understand it as the convergence of advances in medical informatics and biotechnology which will allow for super-personalisation of treatment for patients by segmenting populations into smaller groups (hence the other name for it: Stratified Medicine) at the popultaion level and more granular tests on individuals (including genomics) at the individual level (hence the other, other name – Precision Medicine). Of course, the NHS wants some of this, but what is not at all clear is how to best approach it.
The meeting brought together an incredible mix of patients, carers, academics, commissioners, third sector executives, scientists, and a few doctors, in an effort to begin to answer some of the questions raised. In Steve’s own words, it was a horizon scanning event, which looked to identify those technologies that could help deliver Personalised Medicine in the NHS.

Dr Fiona Carraghar, Deputy Chief Science Office (@depcsofiona) started us off with a clear explanation of Personalised Medicine, breaking it down into its alliterative components: Prevention, Precision, Prediction and Participation. There are a number of projects already well underway, including the ‘100 thousand Genome project‘ which has progressing nicely since it kicked off in December 2010. There are now 13 Genomic Medicine Centres in England, which have generated huge volumes of data that are being used for research and tailoring patient diagnosis and treatment in those with cancer and rare diseases.
Sir Muir Gray(@muirgray), director of the National Knowledge Service & Chief Knowledge Officer to the NHS, was next up. Bold and entertaining, he claimed that we stand on the verge of the third medical revolution:
  • The first: Public Health.
  • The second: (everything else in between).
  • The third: Mobile Phones.

He stated that the incredible processing, networking, and empowering effects of the mobile phone have transformed every aspect of our society, and now it is hard to find people who don’t have access to one. This revolutionary tool has the power to amplify both the benefits and the harms of medical investigation and treatment, so we need to be more thoughtful than ever in how we apply them.

Sir Gray is also a big fan of maps: the sort that show you the difference in treatment between hospitals. He spoke of a dream that every hospital has one on their wall, highlighting the variation in investigation and treatment of diseases. Personalisation does not mean eliminating the variation, but rather recognising we need to be asking why is there variation, and understanding the cause. As an active participant in the East Sussex Better Together programme in my home CCG, I can attest to the challenge of developing a good understanding of this data to help deliver a high quality integrated health and social care organisation to my locality.

His parting request was for everyone in attendance to help not only create and foster innovation, but also work towards adopting it widely in the NHS. This is a message I have heard many, many times: from providers, commissioners, patients and carers alike. It’s something I’m committed to helping with, and with Sir Gray’s encouragement my resolve has been suitably stiffened.

The final keynote was delivered by Lord Victor Adebowale (@voa1234), who came to ask a series of simple but powerful questions from his notebook:

  • Why are we pursuing Personalised Medicine, when we have so many other simpler problems to solve?
  • Who does it benefit?
  • How do we ensure that this doesn’t widen the gap we know as the Inverse Care law – that care is least available to those that need it the most?

In contrast to Sir Gray, he claimed that mobile telephony and internet access is not equitably distributed, with 8 million people in the UK have no internet access. I was surprised by this, as were some of the people following my live-tweeting. Sure enough, the ONS Internet Access survey of 2015 shows only 86% of households as having internet access.

Lord Adebowale was elected as a people’s peer for his work as chief executive of Turning Point, and I’m delighted to have someone of his focus and intelligence asking these importance questions at the highest levels of government. It certainly focused the minds of the attendees, and closed what was an truly outstanding opening session.


With that we were into the workgroups. I sat with the group discussing Patient Participation and Genomics, others looking at Personal Health Data and Population Health Management. Each session was led by a domain expert, which set us up nicely for what turned out to be lively and wide ranging discussion about how the fundamental tools of Personalised Medicine – shared high quality data, and genomics – might be used in a practical and ethical way within the NHS. Other groups considered big data and data from wearables and other sources.

There is clear tension between the realising the promise of these two rapidly advancing fields and the needs to apply appropriate controls to ensure security & confidentiality. We also need to minimise the risk of harm from its over-application. If we are to make the most of Personalised Medicine in the NHS, we need to make sure that the needs of patients are front and centre, and that we don’t simply rush ahead, justifying our pace by believing we have their best interests at heart.

I approached the consumer end of the genomics market (23 and Me) courtesy of a christmas gift from my parents. I thought little of the implications of being tested. Even with nearly 25 years of medical training and practice I’ve been baffled by some of the results, and left two locked and unviewed (my Parkinsons and Alzheimer’s disease risk).  I’ve had two patients share their data with me in confusion, and I haven’t been much able to help. This is a dangerous situation, as the scope for health anxiety, fear, and unnecessary investigation and cost is great. Equally, the gold standard work of the NHS Geneticists is difficult to scale, so we’ll be left dealing with a heterogenous and inequitable situation where large scale gene sequencing may be restricted to those with money, leaving them to reap the benefit and harms, whilst those that might benefit from this the most either wait for access, or receive only a small portion of what might be possible.

I can’t deny that I’ve also personally seen a benefit from my genetic data though. I know now that I am a rapid metaboliser for Proton Pump Inhibitors (clinical grade antacids), which explains why Omeprazole has never settled my heartburn. My elevated risk of Type II Diabetes, only revealed to me when I ran my 23 and Me data through a different analysis, was certainly in my mind when I committed to weight loss using the 5:2 diet in the past few months.

As you scale up the data sets, more is possible:

  • An instantly accessible and accurate national organ and tissue donation registry? No problem.
  • A fantastically powerful disease screening system, which can be upgraded at the touch of a button? Absolutely.
  • Can we have cognitive computers deal with all of this while we get on with the more important stuff like speaking to patients? Of course.

When linked to other databases, the possibilities become staggering. Its certainly seductive stuff, but as Lord Abedowale asked: how do we ensure the benefits and harms are considered and equity is assured?

The other concern about Personalised Medicine, felt principally by the providers such as me, is that this adds an extra layer of complexity to our already over-stuffed workload. With burnout in GPs at a record high, it’s going to be an exceptionally tough sell to convince my colleagues that we should be doing more in the limited time we have with patients. The history of innovation in healthcare is not really characterised by the freeing up time, but rather one of making space into which more work is crammed. I certainly feel quite distant from many of my patients, often like a production line worker, which is dissatisfying for all concerned.

Could it be that Personalised Medicine is different? Assuming a patient spends 10 minutes with their GP once a week, every week of the year (an exceptionally high consultation rate by any standard), that represents less than 0.1% of the patients time. It’s not as if their health and wellbeing is paused for the remaining 99.9% of the year. By handing back greater control and ownership of healthcare to patients and their carers, perhaps we can all get much greater use of that time, saving the valuable time in each other’s company for the sharing expert knowledge, making decisions based on mutual understanding, exploring options creatively, and perhaps even having some time for empathy – something that Muir Gray feels is the one thing that mobile phones cannot replace!

The final panel drew together the discussions, with a summing up from Dan Gosling, from the NHS Personalised Medicine Core Team. He explained that this day was seen of the start of a conversation, and one that will be followed up as we move forward.

And there it was. Someone from a dedicated NHS team, attending an event convened to explore this in a serious and democratic, diverse way. This is why I have hope that the NHS is taking this seriously, and that there we can genuinely expect to see some of the incredible promise of Personalised Medicine realised for each of us in the months and years to come.

“BINGO!”

 

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