33. Harry Potter and the deathly silence

Harry Potter Deathly Hollows

I’ll briefly repeat my 6 point (bullet) plan for the NHS to preface my focus for today’s section on 5. Research.

  1. Education – underpinned by philosophy
  2. Screening – underpinned by data
  3. Testing – from birth to death
  4. Preventative treatment – promotion of healthy life styles
  5. Research –on preventative medical conditions
  6. Evaluation – led by self-scrutiny

Research on preventative medical conditions

It is a not well kept secret that most medical or biomedical research is aimed at finding treatments or (hopefully) cures for one condition or another, for example, heart disease, cancer or more specifically, Diabetes Type 1. The system is underpinned by vested interest, and clamour for any major change will no doubt be met with “deathly silence” or covert hostility. The current approach to research is admirable and one to which I, myself have contributed.

No, I won’t re-iterate my fondness for Joan Armatrading (Me, myself, I – remember?) with musical or visual illustrations. Now bear with me folks, this blog entry is a serious piece of writing, so there won’t be any visual, musical, film, comedy or poetic interludes, and you are going to have to be grown-ups and read through to the end to find the couple of musical “Easter-eggs” I have buried herein. But I promise you, there’s “light at the end of the tunnel”, “gold at the end of the rainbow”, and a “couple of new artists” to discover, but only if you continue reading from here and preferably, make a comment in the ‘reply here’ box at the end of the whole blog!

…so, to continue with the serious stuff.

My PhD thesis was entitled, “The anaemia of chronic renal disease”. Also, I worked with many clinicians and research students to discover more about, for example:

  • interactions between platelets and prosthetic materials used in venous grafting;
  • binding of platelets to defective connective tissue in Ehlers-Danlos syndrome;
  • levels of platelet Adenosine Tri-Phosphate (ATP), and Adenosine Di-Phosphate (ADP), an intra-cellular biochemical as well as an extra-cellular aggregator of platelets (causes platelets to clump or clot together to prevent blood loss normally), in unexplained minor bleeding disorders; and
  • effects of human immunodeficiency virus (HIV) on blood coagulation factor interactions.

With hindsight, I now see that although these and the many thousands of medical discoveries that lead to better treatment of patients’ suffering are admirable; and ironically, contribute to the very success of improved health and social care in an expanded global population, through substantially reduced infectious disease in some parts of the world, and increasing longevity in both western and developing societies. However, this will not be a sustainable strategy for the future.

The aim of research is to translate laboratory or pilot studies to serious clinical trials and eventually to practice. This is the challenge, as this translation process does not always materialise, but can’t be avoided as part of an overall experiment. Similarly, research designed basically as a “treatment of disease” approach is not likely to translate easily to a “proactive, prevention of disease” approach, designed to reduce incidence and prevalence of illness and disease. Accordingly, I suspect, a new overall strategy will be required for the New NHS despite many proactive, preventative efforts and projects already being pursued.

For example, intense efforts are being made to develop better blood-taking and drug-giving devices for new-born babies and for insulin-dependent diabetics (Type 1). The so-called Velcro-type patch comprising hundreds of micro-needles on a small Elastoplast-sized backing pad which when applied can be used to take heel-prickblood samples in neonates without pain and much less tissue damage. The hope is also to be able to administer drugs or biological therapies for example in diabetics, such as recombinant human Insulin (rhu-Insulin) through the same device which can be similarly used to withdraw blood, at least for blood glucose-level testing. After treatment the patch can be removed much like a current Elastoplast with minimal inconvenience. This would be a major improvement over the current methodology for daily multiple testing and treatment of Type 1 diabetics.

Early death diseases

There’s a raft of relatively rare but ‘killer’ diseases that are predominantly genetic, requiring both parents to have contributed a recessive gene to generate a homozygous (both copies of genes are similar) condition or phenotype (both recessive genes are needed for the expression of the disease state). The disease state may be immediately apparent after birth of the affected child or the symptoms may be delayed and for some diseases early death may ensue. These conditions include Multiple Sclerosis, Huntingdon’s Chorea. Much research and funding is already aimed at discovering preventative measures but much more is required. ‘Minority’ diseases would be given a definitive slice of the research pie in my new NHS.

Diabetes

The cause of Diabetes type 1 is still not fully understood but the cause of the massive increase in Diabetes Type 2 can be largely attributed to life-style choices, in this case over-eating and the development of over-weight/obesity. There’s still a small proportion of type 2 diabetics where the cause may be known or even not known, but they are not in this new life-style category. The impact, particularly of this in childhood and young adults as well as older people (those previously and mainly affected), is that the treatment bill and cost to patient health is not only attributable to diabetes itself but also all of the usual suspects, side-effects, obesity, heart disease including heart attack and stroke, and thrombosis leading to poor circulation of especially the extremities (hands and feet) and potentially resulting in amputations. The cost to all health care bills is enormous and growing worldwide. Preventative research would surely pay huge dividends as a long term investment?

Genetically-linked disease

As genetic profiling becomes a ‘norm’ in the future NHS it will be possible to determine whether there are links between phenotypes or even ‘carriers of particular genes‘ and the incidence of major diseases such as heart disease, cancer, lung disease as well as rarer diseases. This would open further potential anticipatory interventions as medicine became more confident in its approach to proactive medicine based upon research findings such as these – better predictors of future, potential patients.

Researching Disease and ‘the money’

One of the barriers to adopting a proactive, preventative approach is that it ‘costs too much‘. In the new NHS we would need to reverse this mind-set. A key question will be, “is it not more expensive to continue with old approaches?” This may well be the case, especially longer term. Often however, the answer is not known. So, research to answer these questions will be required more and more as NHS funding becomes ever more limited as spending per capita rises and overall budgets stagnate or are cut. This can be summarised as “retrospective analysis of treatment costs for diseases, particularly late-onset, though not only” and cost of early intervention.

Evidence-based medicine as well as research will require awkward questions to be asked. For example, despite some claims that gastric banding is an effective treatment for overweight and obesity, to me, it sends the wrong message ie treating the patient’s symptoms and not the cause. Plus, my own stereotyping of overweight patients has maybe clouded my view. I say this now since my gastric cancer which largely occluded the whole of my stomach lumen possibly acted like a gastric band. My appetite diminished progressively as the cancer presumably grew until I commenced chemotherapy. But it also continued since and overall I have lost four stones. Whilst not all of this is likely to be due to ‘gastric banding effects of the cancerous lump’, it is undoubtedly a component. So, I now see how and why gastric banding works. Will it be less costly than other interventions either short or long term? Do we know the answers already? If not, this may be research for the future.

Where is the money coming from for research and new approaches to medicine? This may be a major research question itself, but there are a few other questions or approaches that can be addressed.  Can savings be made from not treating preventable ill-health and reduced treatment of age-related diseases?  Who pays and how, when ill patients rather than healthy(ier) populations still predominate? Treatment may have to be front-loaded initially and then gradually scaled back in say, a five to ten-year transition period. Also, maybe there should be more direct links between those gaining most from national profits on curative treatments and drug sales from suppliers and vendors (Pharmaceutical companies, medical device manufacturers and sales companies) and the raising of revenue to be spent on the New NHS?

Finally, maybe further revenue should be raised through levies and taxes on harmful products eg sugar in soft drinks, nicotine in smoking products (cigarettes, cigars, pipes) as well as reduced and non-nicotine products (E-cigarettes) that simulate or prolong coming-off nicotine containing items. The present Government has already proposed such a tax – a 10p premium on sugar-containing soft drinks, particularly those aimed at the child and young adult markets. Governments will simply need to be bold (tell truth to power) when they deal with opposition from vested interest groups. Researching the impact of such levies and taxes might also become a more acceptable or legitimate activity in future, though probably it would fall into my category 2 or 3 (see below) in a new classification scheme for defining research.

 

The Future of Medical Research?

We require more forward-thinking or anticipatory approaches such as these. While we focus on treating current illness, and not on future health as well as current health, the imbalance in ‘treatment-focusedversus ‘health-focused’ research will persist.

Individualised health care utilising complete personalised genotypic data may well be the future; and it is not just me that thinks so. Mark Beggs (quoted below) is already leading an innovative approach to the use of informatics to assist, where appropriate, in the treatment of patients utilising genomic data (gene profiling based on the Human Genome Project).

[Mark Beggs: “AnalytiXagility extends its services to industrialise the ability to link and analyse sequence and other data sources to support precision medicine research and initiatives.

The platform provides capability for national genomics facilities, genomics initiatives in the NHS, stratified medicine research, bioinformatics start-ups and annotation service providers.

These services are made available through the Stratified Medicine Scotland Innovation Centre (SMS-IC). This unique centre brings together experts from academia, industry and the NHS in Scotland to implement a biomedical informatics service to aid clinical and translational research, and enable stratified medicine. As the lead industrial informatics partner, Aridhia is able to offer immediate solutions on a monthly subscription, without the need for investment in infrastructure.”]

Now I am not quite sure what stratified medicine research” (Begg, 2015 – see above) actually is or could entail, but if it is about defining different types or classes of research (such as say, new-proactive; current-substantiate and old-modify) and then prioritising these differently, then I am fully supportive of stratified medicine research. Furthermore, I’d favour the following prioritisation for clinical and scientific research projects:

  1. New-Proactive (focus on genomics and approaches that have long term health benefits or reduce costs long term, though there may even be increased short term costs)
  2. Current-Substantiate (focus on demonstrating effectiveness of newly adopted protocols; further validation of current protocols; and collection of side-effect data on drug or procedural interventions, especially multiple-drug interactions)
  3. Old-Modify (focus on minor improvements or reducing known non-life threatening side effects of treatment, especially for those diseases that are preventable by life-style interventions and may also be classified as age-related diseases or conditions)

If research could be classified in this way (or similar) and that it was prioritised as 1 > 2 > 3, then this would be a positive ‘driver’ for a switch to ‘preventative-type research’. Both Governments and Industry could further incentivise a shift-over by making research or development grant funding available using a similar order of priorities, or by allocations of specific percentages of ‘winning grants’ in line with world-agreed priorities eg 1 (60%) > 2 (30%) > 3 (10%). This would further promote a shift but also keep the ‘old model’ going as older researchers and research projects continue or are gently phased out. In addition, some research and its funding would still be required to monitor, evaluate and ‘tweak’ the previous ‘new’ work as it became the ‘old’ research and practice. This would be necessary even if monitoring and evaluation were embedded in new proposals for research or development grants.

In summary, in the New NHS proactive and speculative research will play an increasingly important role in sub-serving the aim of decreasing the incidence and prevalence of disease. It will also aim to reduce the impact on patients of specific diseases that may have no cure or limited treatment potential. It will also be geared to seeking how to minimise the costs of diagnosis, screening and treatment, particularly of life-style related diseases.

The current trends in research funding will be reversed and research based on data and hard evidence (the numbers) and derived information should and will also be more prominent. Research funding and priorities will lead to the re-alignment of rewards for those undertaking research. The present categories of ‘weighted’ and ‘recognised’ (Citation compendia and ‘top-ranked’ journal articles) will need to be challenged. The use of big data (eg the genotypic library from the human genome project) and informatics will play an increasingly important role not only in new, personalised treatment but also in leading as well as intimating at research and potential research projects.

A methodology for determining the priority of these new categories of research will be needed, though at least two suggestions have been made here. Financing research and development will probably require more money than at present, and several options have been presented and explored. This will not necessarily be ‘new money’ though in the first and early years of transition this may be true. However, as the New NHS matures and (hopefully) fewer patients develop diseases, or, at least, the same number of patients with fewer and less harmful symptoms should release ‘old money’ for newer treatments and new research.

And now, your prize (for reading the article).

As promised, here are your Easter eggs. They’re not exactly buried well, but I trusted you not to just skip to the end of the article after my tip-off earlier since you’d probably think that I would have a nefarious plan to ensure your uptake of my offer of “goodies for reading” wouldn’t be easy. If you are here already and haven’t read the rest of the forgoing text, then perhaps you’ll amuse me and read it anyway?

Those of you who have read all my blog entries may be aware that I have already briefly mentioned Keb’ Mo’, by name only (no music titles or sound bites offered). So, he is my first offering today.

Keb Mo Montage

Keb Mo from a little later than his first album (also Keb Mo, 1994).

Keb Mo Am I Wrong – YouTube

Accessed at https://www.youtube.com/watch?v=qKQWhsLbe9E on 14 January 2016.

Here’s a little background. Elaine and I first encountered Keb Mo (I’ve dropped full spelling from now on!) at Coromandel Blues festival in 2008, on North Island, Coromandel Peninsula, New Zealand. He was billed at about six down the list, on the main stage, on the last night which also featured Buddy Guy (top billing) and K T Tunstall (second up). It is fair to say that Keb, standing alone with an acoustic guitar and just the PA, absolutely ‘blew us away’ as well as all the other acts, in my opinion. We saw Keb play again in Melbourne in 2011, by which time I had purchased about 8 CDs from his back catalogue. There’s lots of goodies, but as a key sampler do have a listen to, “Am I wrong”, a fast moving track from his first and eponymous album. It’s amazing – again, in my opinion – though you may need to like blues music, at least somewhat, to even begin to agree!

My second choice is more straight forward, but only a little. We returned to the UK from Australia in 2012.  Three months later I bought a sampler, triple CD album (“Latest & Greatest ACOUSTIC SONGS”, 2013) for only £5.99 from Tesco.  It was going to be some further four months before we would be unpacking my precious hi-fi and collections of LPs and CDs and I simply couldn’t wait! Now who would have guessed that I would come to fall in love with three tracks, in particular from disc one, and that one of these would become my favourite on the whole album. Even I wouldn’t have believed it, in advance of listening anyway. However, the proof is in the listening: try Pixie Lott’s “Mama Do (uh oh, uh oh)”, Ryan Adam’s “Wonderwall” and Duffy’s “Mercy”. And the winner is… very difficult to pick!

Seriously, who would have thought an American could do a better version of “Wonderwall” than Oasis themselves, but it’s true! However, I give the prize to Pixie Lott for just surprizing me with an acoustic version of a song I know well but kept me wanting this version of “Mama Do” to continue just that little bit longer!

Pixie Lott Montage

Pixie Lott and Mama Do.

Pixie Lott – Mama Do (uh oh, uh oh) – YouTube

https://www.youtube.com/watch?v=RPV8c3Q4D8U

 

BUGS001

 

That’s all for now, folks. I think I have earned my rest which I plan to take tomorrow. See you in a couple of days.

 

 

 

Advertisements

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s