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Long-Covid, Data, Confidentiality And Scientist-Citizens

March 24, 2021

I recently had a modest involvement in a study concerning the use of clinical data in health care. The enquiry is wide-ranging but I hope I had something to contribute in terms of public confidence in the use of ‘their’ data for medical research.  I suggested that most people have scant idea of how such research works, and that it might be a good idea, along with the increasing engagement of ‘citizen-scientists’ (‘lay’ people who help to generate data) to have ‘scientist-citizens’ – science professionals who actively explain how the data is anonymized and used, and why they need it.

Below is the gist of my submission to the enquiry. The commentary focuses to a degree on Long-Covid – a very topical issue just now – and the UK National Health Service (NHS) but also has a wider take on medical science and on matters such as approaches to the eradication of female genital mutilation (FGM) and, in fact, my own long experience of auto-immune conditions.  I don’t usually write about myself, but maybe, given my own auto-immune conditions, it makes sense to do so just now, as we all recognise the need to know more about Long-Covid and similar conditions?  

I’d like to think that the combination of medical ‘scientist-citizens’ and properly engaged ‘citizen-scientists’, aka ‘patients’, could be quite powerful?  Could ‘the science’ move faster and / or better if more attention were paid to what patients have to say? I’d be interested to learn whether readers agree with what I suggest.

Many questions and points arise in the context of this topic, especially from my perspective regarding the issue of public engagement and confidence in the use of data (codes) in the British health service.  I take it as given that the large majority of the British public are currently to varying degrees ‘donors’ of medical data, and I have added a brief commentary on my personal experience of long-term medical conditions.

I will collate my thoughts under a few headings:

  • Who am I?
  • Acquiring the info
  • Whose knowledge?
  • Confidentiality
  • People
  • Broader issues

My responses address questions around how the NHS can or could analyse and use data routinely to improve quality, safety and efficiency.  It is, as noted above, important to know that usually the data employed is presented as anonymised codes, not as individual data.

Who am I?

My professional background
I started my undergraduate studies in natural science, before turning to social science; and in 1973 I gained an MSc in the then-nascent subject of Sociology of Science and Technology (my research focused on gender and science, but a lot of the course was about the nature and functioning of science per se). Thereafter I had a career in mainstream sociology teaching, and since the Millennium I have researched and written about FGM, but the Sociology of Science has remained central to my understanding of how knowledge emerges.  Amongst other roles, I have been a member of the UK DEFRA Science Advisory Council, a Trustee of the Liverpool School of Tropical Medicine and a Non-Executive Director of an NHS Trust.

My relevant ‘personal experience’ background
I can’t be certain about cause and effect but my childhood and early adult years included nasty bouts of measles and chicken pox (no vaccines then) and mononucleosis (glandular fever), and in the first trimester of pregnancy I had serious influenza (then no vaccine for that, either – and of course the incidence and awareness of measles, ‘flu and other post-viral conditions has thankfully dropped since that time, as vaccines have prevented these illnesses). 

Looking back with the benefit of hindsight, I suppose it is therefore unsurprising that by my 30s I had (what was later diagnosed as) psoriatic arthritis, and subsequent diagnoses of Sjögren’s syndrome and fibromyalgia – a whole auto-immune package. (At least I had the ‘comfort’ of blood tests which showed I really was ill, unlike some others with rather similar symptoms.)

Perhaps also unsurprisingly, by my mid-40s it was clear that I would have to retire from my Senior Lectureship in Health and Social Care, and it took me a very long while to re-engage with professional activities of any sort. I have never since held a full-time permanent post.

I mention my experience, however, because, until this year when I read about the symptoms of Long-Covid, I had not fully realised the striking similarities of my conditions to those of others who have experienced serious viral illnesses like Covid (e.g.: muscle and joint pain; fatigue; physical slowing down; impaired sleep quality; limb weakness; breathlessness; short-term memory loss; ‘brain fog’ etc).  With no family history of anything like the conditions I have, their origin had been a mystery.  I now know that various of the treatments I received (at a respected rheumatology clinic) are very like some prescribed for a variety of symptoms of Long-Covid, but at no time has my own history been explored or deemed of interest.

Whilst always kindly, my clinical treatment has to the best of my knowledge consistently comprised simply fire-fighting whichever symptoms are most pressing at any given point.  Perhaps more curiosity earlier about the causation of the conditions I have would have helped in attending to the Long-Covid experiences of many people now.

After some 30 years I guess all this is largely water under the bridge, but it leads me to my first substantive points about data:

Acquiring the info

Clinicians are always under pressure of time.  With just ten minutes per GP consultation, it is probably rare for a patient to be asked to explore freely for him/herself all the possible symptoms or contextual factors presenting with a condition.  The GP will more likely interrogate the symptom which s/he expects to arise from the manifest complaint. If even 5% of all consultations were randomly allocated extra time for patients initially to ‘tell their story’ properly, I would expect in the longer-term – especially if Artificial Intelligence (AI) is brought to bear[1] – that a more complex and ‘truer’ picture of the aetiology of conditions would appear.

Nonetheless, records will only capture what is recognised by the system to be relevant.  This may be the most significant filter of all.  Medicine has a protracted history of dismissing certain conditions as a lesser importance (maybe because no treatments have been developed?) and it need hardly be said that the conditions of middle aged women, for instance, are sometimes of only marginal interest. There is sometimes a need to remove the ‘invisible’ ‘filters’ that prevent the stories of less powerful people – whether their invisibility is by dint of gender, BAME or otherwise – being heard.

We cannot dismiss gender and ‘race’ (ethnicity) or other filters any more than we can dismiss the obvious fact that ‘exciting’ research more often involves big labs and white coats (e.g. virology?) rather than the laborious combing over of, say, public health[2] data.  Some aspects of research are more ‘interesting’ and dramatic, with more prestige and better funding, than other aspects.[3]

Maybe AI will change things, but thus far the first reality of science is still that in the majority of cases that we will only see what we are looking for.

The modus operandi of medical science is via reported research and funded projects.  Certain conditions are deemed more interesting (and lucrative) than others; with the obvious, but generally unspoken, implication that patients with other conditions should not expect much in terms of evidence-based research and remedy.  This is hardly the best message for encouraging the public to support the use of their data.  (I am acutely aware that my commentary here is also very short-hand for the complex issues around Big Pharma.)

Whose knowledge?

I have attended national presentations of final state-funded scientific research results where the contractual requirement to explain socio-economic impacts was regarded as a slightly amusing distraction not to be taken seriously – even to the extent of simply leaving that ‘box’ empty.

Why do even not-for-profit funders allow this to happen?  Are they not playing to the idea that ‘the science’ has little to do with research for real people?  Should not all publicly funded scientists be expressly publicly accountable for their work? Wouldn’t that help people to understand why research data is important?

Open science and shy scientists
I accept that my own work, which I always publish on my website, is easy to share because I don’t use large co-owned data sets etc, but the issue of open access to all work (and most data) is critical – and especially so when it is directly about the welfare and health of real people.

Likewise, I am often asked to review academic papers submitted to journals.  The growing tendency to name referees is to be welcomed for many reasons.  I think too that it will help to move forward the public case for the scrutiny and encouragement of research.

Scientists are trained from their early years not to divulge their research until they are super-sure the findings are positive and okay; negative findings are often quietly ‘disappeared’.  It is easy for me to put all my work on my website because in reality I answer to, and am paid by, no-one. I am happy for others to tell me if they disagree, and perforce I work as an individual researcher; but there is also no excuse for not sharing the ‘stories’ of on-going research that apply to every such endeavour, whether individual or collective.

The production and developing uses of data, often paid for by us, the public, should be told as an adventure, something exciting and important which will in whatever way help to inform good health care; but instead it is often shrouded in abstract technical secrecy.


NHS confidentiality
The NHS makes a massive thing of confidentiality – just try downloading the NHS App to see how many personal info hoops you have to jump through.  (I know that in addition to data functions, this App has also been developed partly to save clinicians’ time and make the NHS actually ‘accessible’, but is the palaver worth it at the present stage of data collection?  Has that question actually ever been asked?)

No wonder people are suspicious; there is never any balancing explanation of why data (or, in our terms, probably codes) are essential for the furtherance of research in all our interests. Nor is there any evident or obvious over-arching framework that people could understand about how data will safely be used.

Public confidence
My own experience of being the active subject of research is mixed.  On one occasion I ended up with two very sore, bruised arms, simply because I allowed a blood sample to be taken; another experience was of having on random days for some years to complete a hugely detailed questionnaire about every morsel I ate – the responses cannot have been fully accurate and in the end even I gave up (and I’d guess no-one ever responded on a day of making merry); and more recently I was asked with absolutely minimal notice to pitch up elsewhere to be a subject of a two-year monitoring programme (for the Pfizer jab); I couldn’t go because I had a precious grocery delivery booked for that time. … and then we have the Covid-19 Test and Trace initiative, the most recent publicly visible iteration of why, it seems, ‘the science’ is dodgy.[4]

Such a casual approach to goodwill must inevitably lead some people to suspect the research is shoddy.  If we want people to go along with the use of their data, we have to respect them and it…. And I will resist moving on to the perennial anti-vaxx ‘debates’; that’s a whole new subject, itself making serious demands of those promoting the rational acceptance of modern medical developments.

Quality control of what the public sees as research is essential.  Are there formal shared guidelines / requirements – beyond ethics reviews[5] – anywhere around how the quality of the interface of medical research with the public should be properly maintained?


Volunteers and citizen-scientists
In my own field (FGM) the activists on the ground are often un(der)-funded members of the relevant community.  They don’t always appreciate the known fact that those who ‘direct’ and depend on their work (social, heath, educational etc professionals) are usually in receipt of a salary.  It leads to resentment and a measure of perceived bad faith. [6]

Public participation in other health fields runs the same risk.  Why do researchers get paid, but often volunteer members of the general public do not?   Again, this raises questions about the value of the data which is acquired; and there is not I’d guess much difference between the general public’s views on the data derived from health records and that from research as such.

Other issues aside, one counter-argument to the ‘pay us for our data’ position is that, if we in the UK are in receipt of free-at-the-point-of-delivery health services, paid for by all of us, we are surely also under some degree of moral obligation to permit anonymised data about our health and medical care to be employed to benefit others.  This is of course separate from the very proper reimbursement of costs / lost income, but I don’t hear that counter-argument being made even between scientists.

The issue of citizen-scientists is barely acknowledged, let alone a matter of public debate, but it could assist significantly in taking forward and clarifying the case for using suitably anonymised data / codes in research.  People need to know that ‘their’ data is vital in enabling us to understand and better treat ill-health.

Legal aspects and at-risk persons
Having said all this, it is important to recognise that for some people the possibility that their information could somehow become public is significant, or even life-threateningly perilous.  Examples of this, currently, might include those who experience abuse, have FGM or are victims of forced marriage or rape, have psychiatric problems, etc – though every person will have his/her own list of issues which they hope will never see the light of day.

These are very serious matters, but where is the publicly presented assurance that, whilst quite a number of conditions and situations are statutorily required to be reported, this information is also protected by stringent legal protocols?  But where is the public information to show that the NHS and the legal system recognise the different significances of an accidentally broken finger and a (maybe intentionally) broken body or soul?

Which takes us on to the strange situation where different aspects of the health and care / protection services actually have different concepts of what is ‘confidential’.  We have only to look at the unworkable complexities of the multi-agency approach to FGM to see that things are very far from seamless.  No wonder people may be worried and confused when they are asked to consider confidentiality.

Broader issues
Public confidence in the use of ‘their’ data is critical to how it is shared between the public organisations and private companies which will use it.

I’m tempted to say that the NHS could do considerably more to help itself.  There is a lot more attention paid to the covering of backs / (vital) professional indemnity than there is of explaining why data sharing – even just in the interests of the patient him/herself – is important.  No wonder the public is nervous.

  • When patients are asked to confirm the confidentiality clause in whatever they are involved in, why is that clause not prefaced by a statement which says something like ‘We understand that not everyone is happy for their information to be shared even confidentially, but the confidential analysis of patients’ data will help us to discover more about your condition and how to treat it.
  • Why is there not an info sharing consent form, rather like the organ donation card, which has various options, which is applied across the medical records of each patient?  (I realise the likely answer is partially that the IT probably isn’t up to it?)  This could enable patients to choose options, as the donor card does: (1) to agree to wider sharing including external research, (2) sharing just between NHS bodies, or (3) only between clinicians involved in the signatory’s treatment.
  • There should also be some publicly known regulatory body across the medical research spectrum to which queries or complaints about consent and confidentiality would be addressed.
  • Do most people actually recognise that fully trained clinicians are also scientists?  Do they understand that ‘the science’ (to quote…) is what informs the diagnoses and treatments they receive?  Do they know that knowledge evolves all the time, depending always on what has – or, unfortunately, has not – been observed and recorded?  (The NHS Yellow Card scheme to report adverse medical incidents is a good idea, but who is even aware that it exists, let alone how to use it?
  • Where are the scientist-citizens who encourage the public to follow and understand the process of health / medical science as more is discovered about well-being and illness? Of course, the first response to this is that doctors and researchers are ‘too busy’ to indulge in such things but, as noted above, even when scientists are required to explore the impact of their work in more general (‘lay’?) terms, there may be no penalty if they don’t.
  • So where is the (suitably trained) member of whatever research team whose job it is to explain and proactively report the ongoing work in publicly accessible ways?  (If nothing else, as recent debates about Covid vaccines demonstrate only too well, it would be helpful to ensure most people – including the media – understand the difference between causal connection and simple co-incidence.)
  • Why is it incessantly drummed into trainee scientists that their work is of no external interest, it may not be discussed, until it has been peer-reviewed and published? Is the actual process of science as iterative engagement itself not worthy of exploration and reporting?  Shouldn’t science students automatically learn how to narrate their work to those who fund their studies and work?  (TV programmes such as Operation Ouch do an excellent job of explaining medicine, so why not find more people who can collaborate with the media to extend that genre to include more fundamental medical science?) Wouldn’t that help the public to see why ‘their’ data has value?

The public  ‘deal’ when it comes to data use

Perhaps this is harsh, but I’d suggest that the expert use of data, properly anonymised, is a two-way deal.

We are all, as NHS patients, to a degree citizen-scientists when our data is used for research; but there are far too few scientist-citizens (from all parts of the disciplinary spectrum, from clinicians via medical and social scientists) who explain clearly and respectfully why they need to develop and explore that data to help to cure illnesses and keep us healthy.

Science, after all, is an amazing ‘story’; but, even though some progress has been made in journalistic reporting (not least on Covid)., the more accessible science literature rarely considers methodology or relative risk, and there are still many more cookbooks in most bookstores, than there are compelling, accessible accounts of modern scientific discovery.

. . . . . . .


My aim here has been to explore briefly public perceptions of medical science / practice, and the interface of clinical medicine with patients, as one way to facilitate public acceptance of, and confidence in, the use of ‘their’ data in medical science.

On my 37th birthday two kind friends gave me copies of The Arthritics’ Cookbook – which perhaps follows on neatly from my observation about bookshops, above.  But although that was quite literally half a lifetime ago, it is one of very few events I recall from the time, as I became more unwell.  Thinking back, it was a touching reminder that people cared and, in the absence of any other advice about what I could do to address the situation personally, resorted (as have so many others over time) to culinary guidance – whilst at the hospital the clinical offer was a fairly scary array of potent drugs in attempts to hold the progression of my condition at bay.

But what was never discussed was any ‘reason’ why I was so ill.  Nor do I recall the words ‘virus’ or ‘post-viral’ ever being mentioned, to this very day.  I did get my life together again, albeit it’s a very different, sometimes constrained, life from that before; but I have always felt bewildered by what happened.  Perhaps if there had been more opportunity I could myself have been a citizen-scientist-patient, helping in a small way to contribute to the understandings currently so urgently required for those with Long-Covid.

I hope that from now on the ‘scientific’ interlocution between (willing, interested) citizen-patients and their clinicians will help to encourage greater faith in, and enablement of, clinical scientific progress.  Those of us dependent on modern medicine for our day-to-day lives must certainly have confidence in our physicians; but on the other hand modern medicine itself depends, I’d suggest, also on a willingness by clinical scientist-citizens to engage more openly with the truth that learning and knowledge are matters of reciprocity.

To help ‘the science’ people need to be confident not only that their coded, anonymised health data is vital to progress, but that it is being used by professionals who are partners with the data donors in that process.

There is a real prospect that the heroic current efforts by clinical scientists to confront Covid-19, along with the huge and rapidly emerging scope of AI, will move the contemporary health care of auto-immune conditions to a new level; as indeed it could for many other aspects of medicine. But for that to happen the very best way it can, patients, the public, need to know the stories they can tell and contribute will be heard safely, constructively and with an open mind.


[1] I will assume throughout this commentary that the use of AI will be increasingly usual as the ultimate mode of analysis of complex clinical data.

[2] Maybe Public Health is the Cinderella science?


[4] To quote: ‘Science is more like a torch in the darkness; it illuminates what lies ahead, but what we then do with that knowledge is our choice. And this goes for politicians just as much as the rest of us. Our elected leaders, not scientists, make decisions, and that is the right way round. The role of the scientific adviser is to say what the consequence is likely to be.’ William Hanage

[5] Thoughts on some ethical reviews:


This article has been lightly updated since it was first posted, to accommodate further data / scientific reports about Long-Covid.

Read more about Research


~ ~ ~ ~ ~

Books by Hilary Burrage on female genital mutilation

18.04.12 FGM books together IMG_3336 (3).JPG

Eradicating Female Genital Mutilation: A UK Perspective (Hilary Burrage, Ashgate / Routledge 2015).
Full contents and reviews   HERE.
FEMALE MUTILATION: The truth behind the horrifying global practice of female genital mutilation  (Hilary Burrage, New Holland Publishers 2016).
Full contents and reviews   HERE.


One Comment leave one →
  1. April 5, 2021 09:19

    You’re the champion in connecting the dots. How encouraging to read this overview relating parts to exceed the whole and help make sense of so much! Thanks, Hilary.

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