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

ongoing web column edited and published 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

Patient education and the Little Shop of Horrors

About healthy choices in a data cacophony

How to cite this article?
Longo, Brunella (2017). Patient education and the Little Shop of Horrors. About healthy choices in a data cacophony. icm2re [I Changed my Mind Reviewing Everything ISSN 2059-688X (Print)], 6.5 (May).

How to cite this article?
Longo, Brunella (2017). Patient education and the Little Shop of Horrors. About healthy choices in a data cacophony. icm2re [I Changed my Mind Reviewing Everything ISSN 2059-688X (Print)], 6.5 (May).
Full-text accessible at http://www.brunellalongo.co.uk/

Better wait a minute.
Ya better hold the phone.
Ya better mind your manners.
Better change your tone.
Don't you threaten me son.
You got a lot of gall.
We gonna do things my way.
Or we won't do things at all.
Ya don't know what you're messin' with.
You got no idea.
Ya don't know what you're lookin' at
When you're lookin' here.
Ya don't know what you're up against,
No, no way, no how.
You don't know what you're messin' with,
But I'm gonna tell you now!
[…] 
I'm just a mean green mother from outer space,
So get off my back, 'n get out my face,
'Cause I'm mean and green
And I am bad.
Wanna save your skin boy?
You wanna save your hide?
You wanna see tomorrow? (Ha-Ha!)
You better step aside.
Better take a tip boy.
Want some good advice?
Ya better take it easy,
'Cause you're walkin' on thin ice

Little Shop Of Horrors - Mean Green Mother From Outer Space by Howard Ashman and Alan Menken

London, 11 December 2017 - Health literacy is a field full of hope, misconceptions and sound advice everybody interested in assurance for quality data applications should consider the convenience of having a glimpse of. What things, concepts, ideas or relationship we should baseline, for instance, if we want to educate people about chronic diseases or autoimmune disorders or other conditions like autism or Alzheimer’s disease - for which there is a massive media attention but not a definitive cure or drug and the same medical professions are in disarray.

The core problem is that the abundance of disease related and hyper-specialised research and surveys, literature and advice from the medical sector is always overwhelming and it gets even worse when you turn to the professional mediation offered by journalists and science communicators via magazines, radio and tv programmes. If you join collaborative social media exchanges among patients (like Facebook pages and groups) you may see that everybody is sharing the need for plain and quick advice that does not actually exist: the conversations are usually led by trolls or market surveyors, originate unsolicited adverts or subscriptions to mailing list you never intended to subscribe, and contain scaring posts by worse off people you do not want to compare yourself with.
Occasionally, somebody quote a book, video or other website you may find quite relevant and interesting but it takes ages to understand why it has been posted in that particular thread and who the authors are.

I have acquired a limited but quite solid understanding of lifelong learning and continuous professional education for health literacy while using professional databases as an information broker in the 1990s. That was another online world. Then through several projects always dealing with data for customers in the healthcare and pharmaceuticals sectors I have gradually and skeptically accepted the availability of open sources freely available over the internet, coming from the most various sources. The majority of health information we now find online from sources other than the predictable, institutional ones has good credentials: it is very unlikely that doctors, surgeries or other private, public and non profit organisations divulge bad advice online, if genuine. So whenever I need to understand more about something for my own personal health I do not find any difficulty in locating and accessing the different categories of clinical literature or excellent self-help materials available in electronic formats. If I am seriously concerned about something, and I find the online advice too much abundant and confusing I usually end up borrowing a book at my local library just to reassure myself I am not playing any little citizen science game with my own health and I have understood some basic concepts right.

In fact, there is plenty of contradictions about what is the best way to educate us, as patients.

The only evidence one can honestly rely on is that there is no silver bullet to make us correctly understand and act upon reliable medical knowledge because there is often no reliable medical knowledge consistent over time for an increasing number of diseases. The pace of scientific research, the acceleration of precision genomic medicine, the commercial and financial pressure to exploit secondary data and patients records in the hope of making breakthrough discoveries make what you know and rely on about your disease obsolete right now.
Because of the same investigative nature of their work, academic journals and conference papers are often hyper-specialists and too difficult for the same doctors — a popular quotation attributed to Enrico Fermi: Before I came here I was confused about this subject. After listening to your lecture, I am still confused but at a higher level.

I am not talking here - or not primarily - about specific issues or areas in which evidences of best practices in health education and communication are controversial because there are objective clinical, statistical or socioeconomic controversies on how to handle data to people in order to present them some available choices or complex alternatives — for instance options given to patient in respect of mammographies to prevent breast cancer or ways to explain the vital importance of antibiotics to fight deadly infections and sepsis in spite of their side effects.

Instead, I am referring to a worrying absence of consensus and consistency over time on what methods, experts’ discipline or professional practice can really make a difference (and even prevent any unintentional harm) for patients education in fields that would require systemic, complex or lifestyle changes, like obesity or diabetes, or very prompt and decisive decision making - like in cancer or rheumatoid arthritis.

Once upon a time - let’s say only twenty years ago - we trusted that setting up a library and information centre or a health literacy training programme would help us tackle such an issue. Now the opposite seems true, with further confusion coming from personalised medicine: the more resources we have at our fingertips, the worst is the information overload and its underneath cause, the existing of massive conflicts of interests well beyond any possible scientific controversy.

The noise problem is therefore unavoidable, better keeping in mind that it influences and impacts our doctors’ choices. We ourselves have to deal with it before making any treatment choice. And unfortunately, it does not seem that investing in health public libraries has been particularly successful either for the last two decades: patients education libraries and information centres have been transformed in charities shops, budget for public libraries have generally shrunken. It is not even easy to just rely on the basic book contingency plan I mentioned earlier.

Still a matter of health and safety?

Perhaps at the heart of this methodological chaos (or total absence of engineering?) is the fact that the idea of patients education has been historically seen as a problem for health and safety public policies more than for medicine. And preventative medicine is too much an ideal, liberal and expensive goal for our current welfare system: in fact, patient education is an idea that historically belongs less to medicine and more to the social sciences that tend to blend everything in order to create engagement, attention and pivotal awareness and motivation for people to look after themselves using the available communication channels.

Mixing science with political and economic convenience and marketing influences, colleagues who have specialised in the field of health literacy and education have recently produced magnificent visualisation, textual and audiovisual materials but with little evidence of definitive or measurable effectiveness on patient education.

It seems sometimes they have made the admirable “miracle” of transforming patient education from the boring library instruction field it was confined in the 1960s and 1970s in an ancillary business to pharmaceuticals and ITC industries, but… complicating the life of both doctors and patients in some respects. Media science is more media than science, concluded recent investigations into the ways in which media transmit and represent scientific knowledge(1). I have myself a long record of failed attempts to bring into the science communication field an assurance and auditing approach: as soon as you offer to make a check on the scientific assumption of the scientific communication strategy you can be sure your proposal is buried and lost in the bottom drawer.

To escape the trap of a scientific test of their science communication strategy, the health literacy experts can rely today even on the power of technologies of communications, including devices interconnected with any possible source of data. These devices, in fact, can generate awareness and engagement but above all a context - or frame - in which experts and communicators believe serendipitous discoveries by inference are possible. New correlations will reveal unknown secrets hidden in the human body! But for the fact that the vital advice sought by patients when they experience acute or chronic conditions always comes from very specific solutions offered by doctors in almost binary forms. We can help ourselves with good surrogates (unequivocal clinical literature) but in any case these do not give access to prescriptions. Science communication for patients education looks like a dialog between a blind and a deaf.

It does not pay to ask if a certain medical advice is right or wrong, that is not the point or the right question: the data are there to assure an outcome and the expected value for money. Not for your health and wellbeing, stupid!

Hundreds of health professionals and information management experts are now aware that methods such as myth-bust and anecdotal therapies, for instance, still trendy until few years ago, are to be considered with caution and possibly avoided in some circumstances. And yet they have in the meantime become common jargon used by journalists, tv programs and social media - MythBusters is a successful science entertainment tv production that started in 2003 and as far as I can say from my very limited knowledge and understanding of it (2), it seems the format has now spread to other areas of the communications market, such as conferencing, corporate and professional events and recruiting fairs, social media campaigns and so on.

Professional health education courses at University level and hundreds of patient education programmes funded by governments still rely on assumptions widely circulating in the public domain that self-reinforce the underneath beliefs among some groups of people or aim at outreaching new audiences, exploiting hearsay and word of mouth.

The market pressure to use video technology and data mining (or machine learning) on patients’ health records adds up to a representation of the patient education field that fits with a Little Shop of Horrors scene! You, as a patient, “better hold the phone… better mind your manners” as you are insisting on telling us about symptoms or about a cure we have not yet in the script.

Various ideas to use simulation to educate patients with chronic conditions (3) make me even more pessimistic about the prospects of data analytics and applications for patient education in the short term.

What makes me optimist is, though, the evidence that the majority of people is quite lazy in seeking, selecting and processing new information. This laziness allows to slow down and mitigate the risk of bad decisions whereas the time for established medical procedures to detect potentially lethal conditions is getting shorter and shorter every day. We all want to learn the best available remedies quite quickly, but if we have to take medicines, change diet or use any home remedy in case of scalds we use experts and relatives or trusted sources of information ready available more than browsing for hours the internet, chatting with anonymous Facebook contacts or attending entertaining sessions about type 2 diabetes.

We do not want to be bothered and engage with overabundance of cognitive challenges: instead, we may spend the night googling symptoms but we tend to be conservative in our health choices and stick what we know that works. In an emergency we go to the nearest A&E Hospital Department. For the good and for the bad, this is in any case better than rely on data cacophony and medical advice messed up online by health literacy speculators.

It seems clinicians and health education professionals in the US and other countries have started digest the fact that more data does not necessarily mean more knowledge: there is evidence that we usually make up lot of evidence purposely and even unintentionally, relying on uncontrolled and not curated, not audited data processes.

There is little or no evidence at all, for instance, that training sessions based on myth-busting, especially with older adults, can correct misconceptions about osteoarthritis and increase their health literacy - especially passed the first emotional reaction (4) induced by lovely chats around a warm cup of tea. They may be instead even counterproductive because erode trust in formal scientific information communicated without the lovely tone or the nice cup of tea!

And yet it seems that NHS suppliers in England have recently obtained positive commercial results applying a myth busting approach to health campaigns and to requirements gathering for IT services, in so doing contributing to increased misconceptions about such methodologies among nurses, paramedics, IT consultants, communicators and other professionals who deeply advocate the need of such methodologies to balance the books and “save our NHS” from major damages due to lack of proper funding, trained nurses, etc etc (you say, any issue is right when you have to justify the current approach to innovation matters: if it brings money in the superior interest of patient, even his corpse gets green lights!).

Once man’s meat is another man’s poison! Let’s try the plant diet then

It is when you fall into one of more categories of patients that are usually considered less healthy or less health literate (because unemployed, immigrant, single woman constrained by poverty or other vulnerable circumstances) that you have the opportunity to see the bias wiring the collective knowledge and attitudes existing in health education (but we could say probably the same with any field of adults’ education and development, from finance to cyber security).

You do not have the qualifications, you do not understand modern personalised medicine, you cannot distinguish between two opposite chemical notions, you are much in demand of a change or a myth bust or an educational session!

The examples can be innumerable: you have probably plenty of them yourself if you think about the situations in which you have had some very challenging time or critical incident in your life - or you had an opportunity for what the experts call transformative learning, a change of perspective about yourself and your own world of experiences and relationships - and on top of all that struggle you also had to deal with the Mean Green Mother From Outer Space!

Conclusions

Other people expectations, judgements or behaviours are precious in giving us the nudge (5) we need to solve health problems, particularly if they come from clinicians and health literacy experts that genuinely devote all their efforts to improve people wellbeing - as long as we remain critically vigil on the type of change they want to help us with. Sometimes “After you” is the right answer.

Notes

(1) Russell, N. (2010), Communicating Science, Cambridge University Press, p. 172-189.
(2) I do not follow the current trends in tv productions and I do not even watch television unfortunately - but for few news programmes. However, I have recently collected insight from marketing tv and tv production executives showing that they themselves seem unable to identify who is in charge of a certain content production and supervision or editorial controls within their organisations. They are becoming increasingly aware that there is a high level of abuse of personal data, copyright and moral rights of authors within the sector, with a maze of very fragmented supply chains that exploit gaps and loopholes existing among geographic markets and disengage broadcasters, large publishers and platforms from editorial control and social responsibility - but they themselves do not believe the issue falls into what they consider their own remit or their own hierarchical supervisors or directors. I have seen the same attitude towards disengagement from data ownership and responsibility in other segments of the digital industry, see for instance here my article Save the Safest. Sonia’s discoveries on data falsification and my recent review of a book on data librarianship in Longo, B. (2017) The Data Librarian's Handbook [Book review]. In "LIBER Quarterly", 27(1), pp.89–96. Doi: http://doi.org/10.18352/lq.10206
(3) Lefèvre, T., Gagnayre, R., Gignon, M. (2017) Patients with Chronic Conditions: Simulate to Educate? in “Advances in Health Sciences Education”, v22 n5 p1315-1319 Dec 2017
(4) Ansburg, Pamela I. (2016) Myth-Busting Is a Bust for Patient Education, in Educational Gerontology, v42 n5 p330-341 2016.
(5) Baumgartner, Lisa M. (2011), The Role of Adult Learning in Coping with Chronic Illness, “New Directions for Adult and Continuing Education”, n130 p7-16 Sum 2011.