It’s time I had a say in my medical treatment

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People have been talking about personalised medicine for ages. It’s all the rage in the NHS now with The 100,000 Genomes Project. This project is committed to sequencing 100,000 whole human genomes, from 70,000 patients, by the end of 2017 to help bring in better treatments.

This is because medical professionals are using genetic sequencing to enable them to separate people with similar symptoms into far narrower groups and target medicines at them. For example last year, researchers from the Wellcome Trust Sanger Institute determined that the most common and dangerous form of Leukaemia is actually eleven distinct diseases that respond differently to treatment. Now that the cost of analysing an individual’s DNA is significantly less expensive, it will become possible to link a person’s genes with specific medicines and even diets.

This is great news, in a world where, by way of example, less than 4% of cancer patients actually participate in a clinical trial. In other words fewer than one in twenty five patients contribute to developing the new knowledge about a condition that informs new treatment plans.

So the flaw in the personalised medicine plan is that the only person that the Government and the medical profession are not consulting is me – the patient!

Why not?

I am a patient living with a long-term condition, ulcerative colitis / crohns. I have had this for 30 years. I know a lot about my condition but I am never consulted on my treatment. I have had several different drugs over the years, from azathioprine – which gave me pancreatitis; asacol – which knocked out all my white blood cells, and salazopyrin, which never fully controlled my condition. Over the time my condition has gone up and down.

Now for many sensible reasons, drug dosage is very carefully controlled in any healthcare system and the drug companies are equally tightly regulated. But in a world of ever increasing healthcare problems and healthcare costs, it is time to relook at this approach.

I am on a biologic, vedolizumab, and it is working. I love it. However, it is working too well. I am classified to be in remission and so the NHS now wants to take it off me. If they do, then inevitably my condition will worsen. The NHS attitude is so binary. I am well or I am ill. I take the infusion or I don’t. Why can’t I have a smaller dose? It would cost less and it might work just as well. The answer is that the clinical trials have only led to approval for the drug based on a standard dose. This is therefore what NICE guidelines accept. But why shouldn’t I be allowed a say in this? It’s my body and I have been living with the condition, longer than any doctor treating me. In many ways I am an expert patient with living experience of the condition.

We need to change the approach. It’s time for the individualisation of drug dosage based on personal response patterns to drugs and not on old fashioned and out of date clinical trial methodologies. We need to bring in individual DNA based personalised medicine, and we need to drive active patient collaboration and participation in drug and treatment decisions. We can’t just leave this to the supposed professionals. We need to do 3 things:

  1. Enable patients to have a say in their treatment and in the drug choices and doses
  2. Enable different types of observational research study based on different levels of patient participation over different times.
  3. Establish formal expert patient councils to advise the NHS based on patients living with conditions or disease for long periods of time.

It’s time to get truly personal.

Why are all the innovative “ageing” companies about mitigating pain, rather than delivering pleasure?

Ageing is exciting!

Its just as exciting as adolescence

I know that sounds bloody weird. After all, adolescence sounds like sex, drugs and rock n’roll, whereas for most people, ageing conjures up loneliness, loss of health, loss of friends and often loss of wealth.

Getting old is seen as being a complete turn off.

But actually the business of ageing is very exciting for a number of reasons:

  1. Firstly an older workforce is good for the world.
    1. It boosts national wealth: A UK government study released in 2011 found that increasing time in the workforce by just one year per person would boost the level of real GDP by approximately 1.9%
    2. Productivity rises with age. This has been confirmed by multiple studies from companies including Mercedes Benz, McDonalds and JD Weatherspoon
  2. Secondly older people have more money and spend more and that’s good for everyone – At £320bn a year, the over-50s now account for around 47% of all UK consumer spending, up from 41% in 2003, according to research from Saga and the Centre for Economic and Business Research
  3. Thirdly a huge number of businesses are now investing in making old age more bearable, in areas like in home care, volunteer care, medical devices, healthcare technology platforms, health supplements, DNA sequencing, cloud based medication and behavioural tracking, personalised medicine for chronic conditions and financial services to aid spending controls

I mean look at these amazing companies. What’s not to like? Here’s my list of top 10 innovative healthcare companies who are working to make a difference to people later in life

  1. https://www.counsyl.com DNA screening for the most important moments in your life – helping people understand and navigate their inherited diseases
  2. http://www.babylonhealth.com/ your personal health service
  3. http://www.elysiumhealth.com/ a cellular health support mechanism in the form of a daily pill
  4. https://www.liftware.com/ – Liftware is designed to help people with hand tremor eat more easily
  5. https://www.neurotrack.com/ Developing cognitive health assessment tools to enable early detection of cognitive diseases like Alzheimer’s
  6. http://www.ibm.com/smarterplanet/us/en/ibmwatson/watson-oncology.html IBM Watson uses natural language processing and machine learning to interpete large amounts of data. For example Watson Oncology analyzes a patient’s medical information against a vast array of data and expertise to provide evidence-based treatment options.
  7. http://www.proteus.com/ Proteus Discover helps patients with long-term chronic conditions who are having challenges managing their medications. It enables patients to take their medication with an ingestible sensor which communicates with a patch and so enables physicians to provide data driven advice.
  8. https://www.caresolver.com/ making the world of carers simple and better
  9. http://www.oxfordpm.com/ a manufacturer of medical devices, which is producing 3D printed orthopedic and neurological implants.
  10. http://www.medtronic.com/ which strives to alleviate pain, restore health, and extend life for example with an Insertable Cardiac Monitoring System to detect abnormal heart rhythms.

And this is just scratching the surface! And doesn’t cover the other big guys like Apple, Philips, Samsung, Intel, Microsoft and Google with its new Calico Labs

So why is the ageing industry expanding so rapidly?

Well obviously its because we are all getting so much older. For example in Japan, more than 30 percent of the population is already aged 60 or over. And by 2050 India’s population of 1.6 billion will have superseded China’s, with an associated increase from 100 million aged 60+ to over 323 million

So obviously the costs of keeping us all healthy and alive are increasing exponentially.

But actually its also because the top 5 needs of old people are all about losses, whether of physical agility or mental competence or not having enough money. They are not about having more fun.

The Nielsen Global Survey About Aging conducted in 2013, which polled more than 30,000 consumers in 60 countries found that the top 5 biggest worries for the ageing population were:

  1. not having the self-reliance it takes to care for their basic needs in old age (58%)
  2. losing their physical agility (57%)
  3. losing their mental competence (51%)
  4. being a burden on family member or friends (49%)
  5. having enough money to live comfortably (44%)

In the study the social desires were much less important, for example enjoying active social lives and staying connected with family and friends.

But I am excited as an entepreneur and innovator, because i believe that in future people will take having better health for granted and will expect to continue to have fun, even if in different ways to when they were 20,30 or even 40 years old. I think less imagination has been applied to leisure. Noone is dreaming up Moshi Monsters and Kidzania for people over 60. And of course older people don’t want to be treated like old people, which is why so few brands have successfully targeted them with specific leisure services.

I don’t know what the answer is yet, but i am interested in working one out..