icm2re logo. icm2:re (I Changed My Mind Reviewing Everything) is an 

ongoing web column  by Brunella Longo

This column deals with some aspects of change management processes experienced almost in any industry impacted by the digital revolution: how to select, create, gather, manage, interpret, share data and information either because of internal and usually incremental scope - such learning, educational and re-engineering processes - or because of external forces, like mergers and acquisitions, restructuring goals, new regulations or disruptive technologies.

The title - I Changed My Mind Reviewing Everything - is a tribute to authors and scientists from different disciplinary fields that have illuminated my understanding of intentional change and decision making processes during the last thirty years, explaining how we think - or how we think about the way we think. The logo is a bit of a divertissement, from the latin divertere that means turn in separate ways.

Chronological Index | Subject Index

It is a system, not an organ - Part 2

Health literacy and change management in the treatment of autoimmune diseases

How to cite this article?
Longo, Brunella (2019). It is a system, not an organ - Part 2. Health literacy and change management in the treatment of autoimmune diseases. icm2re [I Changed my Mind Reviewing Everything ISSN 2059-688X (Print)], 8.7 (July).

How to cite this article?
Longo, Brunella (2019).It is a system, not an organ - Part 2. Health literacy and change management in the treatment of autoimmune diseases.. icm2re [I Changed my Mind Reviewing Everything ISSN 2059-688X (Print)], 8.7 (July).

London, 27 June 2019 - In the first part of this article I concluded that nutrition immunology or immunonutrition should be a core competence for any doctor. Sadly, lack of change management expertise and conflicts of interest on a global scale make the immunonutrition choice the "controversy of controversies" in medical sciences. (Campbell, 2005).

Doctors should learn more about autoimmune diseases and be trained in immunonutrition but until very recent even concepts like diseases of the immune system or environmental factors affecting health were not even included in the World Health Organisation's classification of diseases (IDC).

Immunonutrition studies the way in which essential nutrients maintain or affect the physiology of the immune system and "the extent to which these processes are altered by deficiency, overnutrition, supplementation and disease".

The first international conference on immunonutrition - to be credited for the above definition - was held back in 1994. As a specialism, immunonutrition is still a young discipline but it counts already on established journals, science research programmes at national levels in many countries, some nutrition practitioners working in hospitals and in a wide range of universities' departments, plus pharmacists, biochemists and engineers working in the pharmaceutical industry keen on opening up to the discipline.

The winning point of interest of the immunonutrition approach to human health is, quite simply, the immune system as a whole, exactly what the entirety of other medical sciences have been excluding from their direct area of research and practice for centuries.

It is a widely accepted conquer of immunonutrition, for instance, the understanding of inflammation processes as pathologic behaviour in many systemic diseases and the ability to reverse the inflammatory flare ups through the plant-based diet in a matter of days when not hours. Reversing inflammation does not translate in remission of an autoimmune condition but very often it makes possible coping with it and keeping it under control, liberating the human body from chronic pain and reducing other nasty symptoms that create temporary impairment or even permanent disability.

And yet, the lack of training of the medical profession about nutrition is a problem well known in America and beyond, as Campbell pointed out (Campbell, 2005), since the early 1960s without any willing to address it once and for all: Doctors have virtually no training in nutrition and how it relates to health - he writes in The China Study. - In 1985 the [USA] National Research Council found that physicians receive, on average, only twenty-one classroom hours (about two credits) of nutrition training during their four years of medical school. [...] The bulk of these nutrition hours are taught in the first year of medical school, as part of other basic science courses. Topics covered [...] may include nutrient metabolism and / or biochemical reactions involving certain vitamins or minerals. In other words, nutrition is often not taught in relation to public health problems, like obesity, cancer, diabetes, etc..

It is a dramatic shame for the whole world of science that the situation of doctors' training has not changed in this respect for the last fifty years: nutrition is still pretty much a rare subject in the curriculum of medical schools in the UK as well as in other European countries.

Food is medicine - so why aren't our doctors trained in the science of nutrition? asked in a newspaper column an activist British GP last year (Aujla, 2018), reminding that lifestyle related diseases cost the NHS around £16 billion a year and yet many practicing doctors don't consider nutrition to be a conversation that they should tackle with their patients.

Besides the lack of training of general practitioners on nutrition and the plant-based diet, there is another aspect of immunonutrition as a young discipline that does not make things easy. It is the commercial approach to human nutrition, very well publicised since the 1980s, endorsed by not few researchers, consultants, doctors, authors that choose to focus on specific nutrients, supplements, fatty acids, vitamins, minerals and so on and so forth and that is very supported by nutritional genomics.

Every season, people at my local gym talk about a different "magic" supplement that should heal everything. Last year was turmeric. This year is zinc! And I am myself very fanatic about blueberries and the magic of other fruits too!

What is the science behind the food supplements research and market? Looking at the way in which single nutrients interact with human cells and tissues scholars in nutritional genomics, a field often associated with immunonutrition, try to see how gene variants and different responses to nutrients affect health and disease management. It is a very intriguing area or research that produces tons of inconclusive and very limited evidence but for marketing and business development.

Looking at single supplements and nutrients outside the context of the whole diet, of what you put every day on the table, is just another way to play games with the immune system, a sort of alternative to biologic drugs for the poorer.

Addressing the lack of training for doctors, Sweden medical schools are revising their curricula in the direction of opening up to interdisciplinarity and prioritising chronic and autoimmune diseases in their programmes (Lindgren 2018). This is very good news that would possibly encourage other institutions to follow and to make a substantial step forward better management of these diseases, especially now that they have been recognised with a class of their own by the WHO.

How will they deal with the increased fuzziness of nutrigenomics is an interesting question for policy makers, not only for medical schools.

Nutrigenomics promotes an approach fundamentally biased in that: we are all prodded into eating nuts or take food supplements at random, and get instant rewards or think we will increase our life expectancy and reduce risks of cancer, on the grounds of studies, randomised clinical trials and experiments that offer as "evidence" all sorts of inferences and weak when non completely nonsensical statistical correlations. And here is where the general health literacy argument seems intertwined with researchers and doctors' specialistic education.

Nutrigenomics sounds as another term for innovation to the salaried academic biochemist or the young healthcare entrepreneur who needs to get fast and easy media coverage in order to attract venture capital.

But out of the context of a balanced and often personalised and strictly controlled diet, all the promises and experiments of nutrigenomics look as the 21st Century version of Dickensian quackery.

Health economics and health literacy should be part of the curriculum

Immunosuppressant drugs and biologics are not the only controversial type of treatment at the edge of medical treatments. All sorts of hypothesis and interesting findings about human health, medicine and lifestyle changes are being tested, endorsed or proposed through experiments in another looming field of research, health economics, that treats healthcare as a belief or credence good or service.

This is actually something that has been around with dedicated journals and scholarships for almost three decades, important public funding and established research centres. What makes health economics particularly attractive and fashionable in the field of autoimmune diseases is its econometric, strict approach to experimentalism.

Findings include insights on optimisation of life and health insurance policies, on how to better organise primary care services, on incentives for self care management of chronic illnesses and other excruciating health and social problems like smoking and vaccinations.

With some indifference to controversial clinical and welfare aspects of health care interventions, the point of view of the econometrist pretends an implicit neutrality on patients or consumers' choices that is perhaps its main epistemological Achille's heel. However, it is indisputable that it has the potential to find a rationale for the oddest ideas and experiments in the market or at least to show the inconsistency, the frailty or the danger behind research hypothesis based on nudging patients towards this or that drug and clinical trial.

Health care is a credence good, and its market is plagued by asymmetric information is the remark of a recent international paper, funded by the Australian Research Council, reporting on a laboratory experiment that tested the propensity of physicians and agents to respond to incentives.

The whole of the reflection is based on the hypothesis that patients have limited knowledge about the reasons for their ill-being and the proper treatment. Following their experiment, the authors observed that less overtreatment occurs in the condition where prescription and treatment are separated and the prescription physician provides services for free but also that the positive effects are limited by the occurrence of more undertreatment. (Greiner, B. et al. 2017).

The separation of prescribing and dispensing medicines is perhaps one of the strongest principles in healthcare and clinical governance - as the same authors of this study remind us quoting, for instance, rules promulgated in 1231 with The Constitution of Melfi by the Emperor Frederic II.

Unfortunately, the authorisation of clinical trials and the administration of new classes of drugs to patients of autoimmune diseases by doctors working within hospitals and research centres, funded or in other way deeply connected with pharmaceutical companies or other organisations that have vested interests in the drugs, is a dramatic degeneration of this millenary principle, that often leaves the same primary care general practitioners at a loss of words and ideas (it is very difficult for a GP to deny the prescription of a drug that is recommended by a specialist and therefore usually very welcomed by patients).

Not all new ideas that call for changes are good. Sometimes the greatest change is achieved doing pretty much anything or very little variations as I will argue in the third part of this article.

New principles of patients' insight, engagement and decision making should be further considered and endorsed by GPs together with a new holistic immunonutrition approach to autoimmune diseases. We should perhaps recognise that a third dimension has huge importance in the drugs provided for autoimmune diseases: prescribing, dispensing and using medicines.

Here is where health literacy kicks in, or it should do.

Ungrippable as shadows, many immune system diseases are approached by the medical specialists as almost non-existing problems until there is a major complication or organ failure.

Treated with personalised solutions, these diseases are targeted with prescriptions related to symptoms, without any actual ascertainable cause-effects relationships. Often there is also a conflict of opinions among specialists due to the controversial evidence offered by different institutions or corporate stakeholders. The regulators may recommend that crafted dosages or side effects should be considered carefully while deciding to take a new drug or not, but that is not an easy bit of information to spot - especially if you are in pain or lack capacity.

We expect that doctors follow guidelines and protocols backed with a very rigid and trustworthy process of quality control and evidence based decisions. And yet, in the field of autoimmune and chronic diseases, it is truly hard to say what quality of care really means to whom.

An international review (Grover, 2015) considered 23 models adopted by medical professionals for the treatment of chronic diseases at worldwide level: mainly focussed on the four main types recognised by the World Health Organisation (cardiovascular diseases like heart attacks and stroke, cancer, chronic respiratory diseases and diabetes), the study gives an idea of what lies behind the uncertainty and sometimes the conflictual directions offered by doctors.

All the studied models are recognised to be rigorously based on evidence, as reported in literature. Some were conceived in the 1990s when there was a strong emphasis on the need for a shift from a reactive to a proactive and patient-centered approach, and several autoimmune diseases were classified generically as "other chronic conditions".

More recent in time, other care models require additional attention to cultural and systemic factors, such as patient safety within the same health organisations, cultural competency or the development of partnerships for community care services.

Some models exploit new technological options, like remote patient monitoring or leveraging on various ways to enhance communications.

However, data collection is, in all circumstances, a crucial quality point that casts doubts on the transferability of these models among different contexts. It is unclear - the authors conclude - if and to what extent the results generated in the U.S settings are transferrable to Europe or other Asian countries.

Contexts matter not only because of cultural and practical differences in the organisation of healthcare or because of racial and ethnical factors, but also because of barriers like transportation issues, finances, lack of support services.

As the authors state, the most widely used and researched self-efficacy enhancing health care intervention is Chronic Disease Self-Management Program (CDSMP) (Stanford University, 2012). The CDSMP - commonly known as "self care management" - aims to provide participants with the self-efficacy and skills required to optimally manage their chronic conditions regardless of the specificity of their diagnosis. The overall aim is to help the participants’ master six fundamental self-management tasks: solving problems, making decisions, utilizing resources, forming a patient - provider partnership, making action plans for health behavior change and self-tailoring.

Patients with autoimmune diseases can look at the self care management model for chronic disease as an inspirational model to deal with their daily troubles and to prevent iatrogenic complications: staying away from immunosuppressant drugs as first choice seems to me a safe way to start or keep looking at ourselves with a fundamental affection for our entirety, for who we truly are.

Loving and listening to our ageing, weakened or wounded immune system is not just poetry: a non aggressive and non panicked way to react to untreatable systemic and chronic diseases, in many respects very different from cancer and more similar to genetic impairments and disabilities, leads to surprising discoveries, creates positive feelings, reinforces the beneficial effects we bring to our daily lives. Having an autoimmune disease is more likely being blind than having cancer. All the body reactions and warnings we have from nutrients, activities, stressors and pain killers or other medications to treat symptoms are the trustworthy information system we can listen to, at any moment, anywhere, to decide our next steps.

How to achieve peace of mind about the choices that are supported by a self care management approach to autoimmune diseases? Look around you. If with a self-managed autoimmune disease you look healthier, fitter, younger and more energetic of many people that profess their sanity it's probably working! Secondly, do not stop reading, questioning, talking and listening: knowledge progresses very slowly, no matter how digitised it is. Health literacy and change never end.

I had a quick look at recent news and studies and everywhere I have just found the acknowledgement that some methodological problems do exist in the management of evidence based management of diseases (the cacophony I mentioned in icm2re 6.5, the absence of doctors training on nutrition I talk about here). Will more research about autoimmune diseases and health literacy help sorting out this level of confusion?

A group of Canadian scholars published, for instance, the results of an international roundtable that in 2013 focussed on the impact of health literacy and patients education in the management of chronic illnesses (Poureslami, 2017).

They sadly concluded that the successful integration of health literacy into policy and practice depends on the development of a more substantial evidence base. Needless to say, the auspicious conclusion of the interesting paper was that the academic community dealing with health literacy need more evidence on what works for patient education, more research to further shape the agenda, more integration and evaluation of health literacy within chronic disease management.

I wonder if there is anybody willing to start a programme to investigate the hypothesis that less is more in the literacy about and management of autoimmune diseases. In the next article I consider the issue of reframing policies for research and healthcare from this perspective, wearing the hat of the patient.