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 3

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 3. Health literacy and change management in the treatment of autoimmune diseases. icm2re [I Changed my Mind Reviewing Everything ISSN 2059-688X (Print)], 8.8 (August).

How to cite this article?
Longo, Brunella (2019).It is a system, not an organ - Part 3. Health literacy and change management in the treatment of autoimmune diseases.. icm2re [I Changed my Mind Reviewing Everything ISSN 2059-688X (Print)], 8.8 (August).

London, 27 June 2019 - From what I argued in the first two parts of this article it should not come as a surprise the conclusion that with all the imperfections of its empirical grounds, a conservative self-care management, starting with plant-based nutrition, is at present the best baselined cure that science can offer to people with a diagnosis of autoimmune disease. It requires patients and their primary care supports to find the science amid tons of controversial - when not evidently pretty useless - "scientific evidence".

The reluctant human guinea-pig

I will talk here of my personal experience of very reluctant human guinea-pig and patient with an autoimmune disease.

Few months after being diagnosed with primary Sjogren's disease, I joined the BSSA (British Sjogren's Syndrome Association) a very useful source of advice and network with other patients and researchers. After a couple of months, together with one of the BSSA newsletter came an invitation to join of a clinical trial managed by researchers at Newcastle Royal Victoria Infirmary and at London Mile end Hospital.

This was presented as "approved by a Research Ethics Committee and sponsored by GlaxoSmithKline". The invitation offered "treatment that is not currently available through the NHS". Namely, the treatments under consideration were said to be "rituximab (which has been used to treat many different conditions for the past 10 years) and belimumab (which is approved to treat lupus)".

"You will be expected to be in the study between 6 months and 1 year - the invitation continued -. To cover for your time and inconvenience you will be paid £50 per study visit and your travel expenses will also be reimbursed."

I found the Association's decision to share my personal details with the academic community without my explicit consent quite arguable but I decided to drop any complaint for the time being to see in practice what assurance and attitude towards the patients the researchers had decided to put in place (by the way, I then put myself forward to join the Board of Trustees of the BSSA where I could bring more ideas on how to engage and foster relationships with academia or promote clinical trials, I was interviewed for the post but considered "not strong enough" compared to other candidates).

I did not exclude at all the possibility to participate in the study. So I decided to take it seriously and ask for more information about it. I contacted the two principal investigators quoted on the invitation letter with a number of questions. I asked to specify their diagnosis requirements (because there are new ACR/EULAR criteria for pSS diagnosis recently adopted by hospitals but many patients have never gone through an auto-antibodies blood test) and what documentation was needed in this respect.

Then I asked what regular assessment would be performed to evaluate the drugs efficacy during the study being possible that in a period between 6 months and 1 year a typical Sjogren's Syndrome patient experiences two dozens of different flares up involving all sorts of symptoms or absolutely none or almost none but occasionally very dry eyes and joints or muscles discomfort (that for an over 50 is pretty much common).

I would have also liked to know what was the venue of the London study, how many visits each participant was supposed to attend (paid £50 each) and what was the amount of travel expenses that would be accepted as maximum refundable budget.

Eventually I asked what was the method of drugs administration (injections, tablets or other) and what are the already known adverse reactions to the tested drugs and / or any exclusion criteria (allergies, intolerances, incompatibility with other medical treatments) one should consider advisable.

The project lead at the Rheumatology Department of Mile End Hospital acknowledged my request and promised to send information about their clinical trials so that I could "read carefully and then we can meet and [I could] ask all the questions in case you want to enter the trial or a different one".

No further communication followed up.

I was not very surprised. My questions very likely raised concerns about the fitness of the whole design of the study and embarrassment for the fact that the sponsor GlaxoSmithKline could reach out patients bypassing the entirety of their primary and specialists' care networks, profiting from a special relationship with the patients association.

At the time of the study invitation, in 2018, I had already learned that current treatment options for primary Sjogren's Syndrome (pSS) are divided in systemic and immuno-modulatory and both class of drugs are known to have side effects that can precipitate the ability of the patient's body to deal with flare ups and stressors at any given time.

My questions therefore pointed out that there could be very flawed assumptions in offering the treatments potentially to everybody and with an economic incentive, no matter that the trial had satisfied the formal requirements for an approval by the authorities.

According to the most recent research, the leading cause of mortality for people with pSS "is lymphoma, followed by vasculitis, renal failure due to glomerulonephritis and infections after the administration of immunosuppressive medications. Morbidity in pSS is mainly due to extreme fatigue and the presence of systemic manifestations and should be evaluated for each patient individually. Patients with systemic complications and lymphoma development have an increased mortality risk. Therefore risk factors (clinical and biological) for lymphoma and other organ involvement (eg, pulmonary function, renal function, neurological evaluation) should be assessed frequently. " (Both, T and al, 2017)

In sum, I may have a chance to live as long as my grandmother - who died at 93 and had rheumatoid arthritis - if I stay away from infections and immunosuppressants. And again: "In recent years, changes in treatment of pSS have developed into a more organ-based approach, mainly due to the introduction of biologicals. Further research should focus on revealing new aetiological targets for therapy and to evaluate the effectiveness of current treatment protocols." (Both, T and al, 2017) I could not agree more. I get rid of joints and muscles pain and other gastrointestinal discomforts that create fatigue and disability through a vegan diet and doing physical exercise. And I manage all the other symptoms following all the empirical guidelines and self-care medications. I do look and feel healthier of the average person of my age that does not have any autoimmune disease.

"Despite failing to demonstrate efficacy in clinical trials - candidly write very recently other two researchers (Fasano and Isenberg, 2019) advocating the testing of alternative drugs in one forthcoming study anticipated online - because of the well-established role of B-lymphocytes in the pathogenesis of pSS [Primary Sjogren's Syndrome], rituximab has been the most frequently used to date, but with much less success than in the treatment of patients with rheumatoid arthritis, vasculitis and lupus".

Welcome on board. I never feed my dog with cat food not even if that smells nice.

The less is more option

A creative and rich plant-based diet requires in my estimate between 7 and 15 hours per week of careful shopping, food preparation and cooking. It is quite demanding for everybody, even for people that can count on relatives or carers looking after them. It is not a pill, it cannot even become a routine, it must be continuously tuned, assessed and adapted day by day. Change and variations must be systematic. Eat almonds butter for six months every day to get more proteins since you do not eat dairy or meat and your body at a certain point will become intolerant to almonds butter - enough is enough. Try cashew butter or walnuts oil etcetera etcetera.

Sleeping, eating, working, exercising, cycling, swimming, washing and everything else done to enjoy one's life and positive relationships with other human beings, with pets and with the whole world of nature and society seems to be the right cure for everybody to prevent problems - not just for people with autoimmune diseases willing to deal with flare ups without aggressive medications.

Everybody newly diagnosed with an autoimmune disease should start a vegan diet and notice what happens in their body and mind just giving up animal proteins and legumes.

Managing the uncertainty of the human body capacity to react to the infinite challenges of an autoimmune disease requires determination in following what we know that surely works without side effects and without being jeopardised by the emotional challenges of trials and errors and the attractiveness of the "miraculous" treatment of the day.

It arises to dishonesty not to say to people with autoimmune diseases that their quality of life can immediately improve if they just drastically reduce or eliminate animal proteins or not to say that changes in lifestyles, such as more physical exercise for instance, strengthen even the most compromised immune system.

Health literacy, not less than information literacy in general, is a multidimensional concept that affects feelings, cognitions and actions and it can be difficult to grasp consistently and foster over time. That is why general practitioners and specialists should be very much aligned with and stand on the side of patients, recognising the pressure of industrial, commercial and often also institutional stakeholders.

I taught the subject of information literacy in various corporate, academic and adult learning settings for many years and with the great satisfaction of seeing results confirmed and reinforced with people from all walks of life (I was considered an expert in the field, before academic colleagues decided that I was not anymore, I do not have the latest degree on the subject!).

And yet, in spite of a high level of familiarity with the methods and process of selecting and acquiring new information, learning and assessing new knowledge sources, processes and politics, I am myself very puzzled every time a new issue, a stressful event or a new piece of information suggests a review of what I already know or what I do and how I feel about my own autoimmune condition. To calm down this "anxiety to know more" it requires lot of energy and, again, change management skills to focus on and to plan what exactly has to be done.

I have found myself sleepless or in agonising muscle and joints pain simply because I made the mistake of eating the wrong food at the wrong time or I did something that is known to exacerbate the symptoms caused by the disease, "in the hope", like a child, I could get away with that. This is quite human. And sometimes making yourself irrationally happy with an exception to the rule works in a quite rational way, distracting your immune system from other potential stressors.

These are the flare-up moments that come out of the blue: we all tend naturally to talk about them with GPs or on texts and other messages through social media. We tend to trust that exposing our vulnerabilities to carers, friends and relatives speeds up the recovery or a solution. We should also take into account that these flare-up moments are often windows of opportunity for the pharmaceutical industry to push forward drugs and recruit patients for clinical trials, for cybercriminals to put forward their scamming and phishing traps, for robbers to mess up your change, shopping lists and paperwork and so on and so forth.

I do feel sorry for many people that are attracted into clinical trials without being given the necessary information, without being able to really understand the options they have to feel better and with very little respect for their overall quality of life. Being a human guinea pig can be rewarding for few and a dreadful and damaging experience for the majority of us.

Campaigns are started continuously by pharmaceutical companies, farming or food industry representatives, academic researchers. They target people with autoimmune diseases and chronic illnesses as well as healthcare professionals. There are huge commercial interests.

The mammoth influence of what I called the little shop of horrors of health data cacophony (see icm2re 6.5) is at times very difficult to deal with on a rational basis and very critical to evaluate also for healthcare professionals and academics: fear and confusion can creep in at any time in what they know and what they think they know, no matter their formal educational background and professional status.

Ten and more years after the publication of The China study by Campbell, and with innumerable other valuable sources about human nutrition and health emerged in the meantime, the evidence that transpires from the world of evidence-based decision making in the management and treatment of autoimmune diseases is that everybody but in particular, and with dramatic consequences, the healthcare professionals and the researchers still know very little about the subject.

Evidence based management is a social technology

Doctors and policy makers should become aware of this much more than they are at present, especially if - how it seems - the pace of progress of research into nutrigenomics and immunosuppressant drugs will be unstoppable in the coming years. These are fields in which no very consistent and established rules of "evidence" exists at present. How many human guinea-pigs must shorten their life expectancy or sacrifice their quality of life before scientist stop treating the immune system as an enemy?

Interestingly, an academic from an American business school (Martelli, 2018) has recently investigated the notion of "best available evidence". He has come to the conclusion that the “best” evidence is produced not by rank or fit, but by variety. Through variety, evidence based management more readily captures the contextual, political, and relational aspects embedded in management decision making . Perhaps this is a good way forward, as the statement reflects, mirrors the fact that the immune system is a system, not an organ.

But in the "posh" world of medical science and healthcare the call for more contextual and complexity awareness often obtains indignation, because of the sense of superiority the field has developed with its strong tradition of evidence-based medicine (at least in the western economies). Patients are often patronised and their insight - the best source of evidence about somebody's immune system so far - disregarded tout court.

Do not misunderstand. Many patients want tablets at all costs and are, in a certain sense, really untreatable. There will always be plenty of patients that do not want to cut sugars or meat they love or do not bother to drink water as recommended because they do not want to wake up in the middle of the night for a wee. In spite of all the evidence offered to them making the case for changing their habits, these patients are in a certain sense callous masochists, acting incurably stupid and against their interests: more than health literacy, they perhaps need a new generation of non complacent primary care professionals, able to lead a massive societal change, to promote cuts on useless drugs and other costly treatments and assertively nudge people towards "mandatory" choices of different lifestyles.

From a policy making perspective, the way in which we represent patients is at the core of the question of how to reform healthcare suffocated with conflicts of interests: troupes of specialists - nephrologists, cardiologists, gastroenterologists and so on and so forth - keep on looking at the human body of the autoimmune or chronically ill patient with an 18th Century "butchery" attitude, ignoring what does it mean treating multiple systemic warnings of infections and inflammation that do not have a cause in any malfunctioning organ of the human body. Because, once again, the immune system is a system, not an organ.

What can be said to the doctors that insist with prescriptions of drugs, or with denial of problems when a plants-based diet would offer immediate better results, such as lowering cholesterol levels, losing weight, reducing inflammation? If I trusted a kidney specialist a couple of years ago I could possibly be needing dialysis now: my evidence was that eating animal proteins was the first cause responsible of my chronic kidney disease stage 3 (stage 5 requires kidney transplant). But for the nephrologist, alerted by a referral from my GP, this was totally nonsense, something he advised I should seek an explanation for by the rheumatologist in connection with my autoimmune disease: there was nothing wrong with my kidneys and I could eat "normally" whatsoever. Of course I did not, and I reversed chronic kidney disease to stage 1 - that for my age is a pretty good situation with or without Sjogren's Syndrome.

Health literacy seems indeed at a crossroad and perhaps health economics can provide more certainty about radical choices: the more informed, rationale and fortunate patients are heading towards the adoption of new safe lifestyles. Also primary care doctors tend to accept and promote principles and practice of self care management, embracing innovations they cannot delay, even when they do not have time to investigate the science behind the solutions because of the financial constraints they experiences. And all the available clinical evidence would not explain why some patients choices are more successful than the protocol's recommendations in any case.

The specialists' spectrum needs a review

The categories of people that actually need more health literacy programmes seem to me the paraprofessionals and professionals stuck at the opposite extremities along the specialisation spectrum: nurses, healthcare volunteers and other paramedic on one side and biomedical researchers and biochemists on the other. How many times do we have to listen paramedics saying half truths or giving superficial and inaccurate advice such as that more exposure to pathogens strengthen your immune system or be told by specialists that we should consider a biologic treatment to tame the incurable immune system?

Beliefs are very difficult to change especially if they are supported with overconfidence in something scientific.

The ethical motivations of these categories of professionals - for instance the fact they campaign to defeat cancer, find a cure, fight pain etc. etc. - or their technical expertise - the fact they have achieved extraordinary success in lab experiments or with their publications - may help with their careers and even have, in the long run, scientific recognition but these factors do not have any implicit scientific value.

Researchers should be taught how to aim for and work within long term safe programmes that do not need to rely on media exposure anytime somebody blinks in the lab in order to get more funding or public engagement: these behaviours are not only unethical but mostly nonsensical from a scientific point of view. They gratify only shortsighted expectations of profits, biased and preconceived hypothesis sold to sponsors as "evidence". There is an immense waste of resources that could be spent for better day by day support and to ease the life of seriously ill patients that have lost their independence together with the control of their immune system.

Researchers can play unlimited experiments around genetic, informational, cognitive and emotional asymmetries but so far the evidence actually points to the fact that they never come close to the weakest of patients' insight about the best choices for the treatment of autoimmune diseases.


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