Beginnings
Childhoods are difficult to remember in detail. My first few memories were about the age of 2 1/2, maybe 3. I had chickenpox and I got an encephalitis. I didn’t know that this is what it was until years later, when I became a medical provider. My experience was that I visually hallucinated (the one and only time in my life). I saw a wrought iron fence around my bed with a pit of snakes that I “jumped” over and ran into the hallway to my parent’s room. I remember seeing snakes climbing all over their arms and they told me that I thought their arms were snakes. I remember seeing my nursery school class projected on the bedroom wall riding a merry go round with all kinds of reptiles all over the amusement.
My parents took me to Dr. Abraham (our family Doc) who carried a little black bag and did house calls. My mother told me he shot me up with phenobarbital and that was the last I remember of the Chicken Pox. I guess I recovered. No hospitalization. This was over 40 years ago. I tell this story because it was my first experience with madness albeit induced by a virus and treatment with a drug.
Overall, my childhood was quite abusive. I remember feeling afraid, alone and sad. One of my first memories was sitting on my stairs at Christmas time crying and saying no one loved me. I was about 3. Why would a three-year-old think this?
When I was 7, I threw myself into traffic in NYC on purpose and almost got hit by a car. I did not have a conscious thought that I would die. I didn’t know what dying was or why I did this. Looking back, I think it was because my father was being his horrible self that day and verbally abusing us and I did it as a result of this awful feeling inside that became who I was. My father pulled me out of the way of the car and then proceeded to hit me repeatedly on the street so hard I peed my pants.
There was almost constant yelling and fighting, between my parents and a severe emotional and verbal abuse that was my father’s way of parenting. He was really a tyrant who was domineering and a thought controller who enjoyed terrorizing as a means to control his family. He was an alcoholic, racist, who chastised, name called, derided, humiliated and bullied me and my older sister. He compared us – who was smarter, dumber, prettier etc and pitted us against each other. My sister was vilified as fat, stupid and greedy. She was also redeemed as the “happy” child. She had a lot of difficulty in grammar school because she thought she was stupid. She grew up believing this lie and it wasn’t until adulthood that she learned she was capable of many things and in fact not stupid.
I was vilified as the child who was “not happy” “who was going to need a head shrinker”, the one that looked most like a Jew and the least pretty of my sisters. My father was of Irish Lithuanian descent and my mother Ukrainian Jewish descent. I believe I experienced my father’s wrath the most in some ways because I basically even as a small child called him on his crazy.
My mother also was a victim and a perpetrator. She too had a very unstable personality and was quite depressive verbally abusive and emotionally absent at least to me as a parent. She would fly into rages and lock herself in her bedroom for days on end. She also in my experience had a complete absence of empathy. She was cold. She terrorized me with her rages. One of the earliest memories was at my father’s building of our house when I was about 3. She was screaming at me at the top of her lungs and locking me in the back of the station wagon because I guess I was supposed to take a nap. I only understood I was scared to death to be locked in the car and remember my mother’s screaming and leaving me.
Another time, when I was about twelve, I was making frozen waffles before school and didn’t realize the toaster wasn’t plugged in, so I was standing there waiting and my mom came downstairs, screaming, yelling about me taking too long and that I was going to make us late. It was so intense, the yelling that I took out the waffles and ate them frozen in shock.
Supports
My older sister and I used to get left alone once in a while when she was around twelve and we would be so happy when they left the house. The whole air of terror lifted and we could relax for a while and breath. We would look out my father’s office window when we heard the car drive back up the driveway and the smothered horrible feeling that I remember to be my childhood would come back.
My aunt, my mom’s sister was a savior as was my mom’s mother. They protected me from my father. They tried to be around as much as they could but even with them around he would be abusive, and I remember him whacking me at the dinner table and throwing his arm around the front seat of the car and whacking me while driving. I remember my grandmother just holding me and listening to me cry and try to comfort me. I loved her so.
My aunt tells me that she remembers my older sister calling her on the telephone when we were little (I was less than ten) and crying saying that “daddy is going to kill my sister” and begged her to come over. I don’t remember this. My aunt and sister both do. My aunt said she called child protection services that day and they told her that unless she thought my father would really do harm to us physically the best thing she could do is not report it and be around us as much as she could, because most likely they wouldn’t take us away. This was many years before mandated reporting etc.
So things were less than great growing up but we all “survived” and I excelled despite this in sports and school. I was a competitive gymnast for about 8 years and a straight A student but overall a depressed kid. There was a bout of anorexia around the age of 16 – I weighed 100 pounds at 5’5″ and my parents took me to some psychologists who didn’t really help with that or my depression. You can’t really help a child with crazy parents. That was my first run in with the mental health system – no drugs. I started eating normally on my own again at some point. I applied to two colleges, Carnegie Mellon U and Fordham U and got into both but decided to go to NYC for school. I wanted to be a writer, but that all changed when I fell into madness.
Going Mad?
To make a long story short, I had no center when I left home for college. I was a shell of a person. Add in the stress of college, NYC, too much alcohol and you have the perfect recipe for madness. I became anxious, paranoid, depressed, and at one time had a bit of what I could guess could be characterized as hypomania or elevation of mood with some rapid thinking and severe difficulty concentrating. At my worst, I felt a deep deep depression – black really. I couldn’t focus my thoughts. I was also paranoid and my paranoia took the shape of my father’s abuse. He would typically intimidate us with hateful horrible stares and then deride us and so my paranoia followed that theme of the outside world criticizing me, vilifying me, staring at me, judging me. It felt as if I had no center and the world was caving in upon me. I would drink ETOH to quell the paranoia also. It was sort of a vicious cycle.
This led to suicide attempts and hospitalizations. College was on and off and then eventually I left NYC and school because I was too sick. During this time I was treated by a doctor who tried Lithium first which did nothing. I was also put of Zoloft for a short period of time and I remember this making me feel agitated and he stopped it pretty quickly. I don’t think I was on it for more than a week or so. I then was put on a combination of Tegretol and Anafranil. The Anafranil caused a severe panic attack on first dosing. I thought I was going to die. I’ve never had a panic attack like that since. The doc said it was the medicine and it would level out. It did. I continued on those drugs for about 5-8 years. I remember feeling drugged and sedated all the time. I could take a two hours nap and still sleep 10-12 hrs per night.
My thoughts were better though than they had been when I was acutely ill and through intensive psychotherapy, I began to get my life back together slowly. It took years of therapy (20+) and the love, kindness and support of my therapist. It was a day by day affair and we contracted for my safety each week.
I eventually went back to school, worked my way through college because my parents of course blamed me for getting ill and got a nursing degree. A friend of my sisters was a nurse and I took some pathophysiology and anatomy course and really liked it. I always have loved science and did well in both math and science in school with a special affection for biochemistry so the nursing thing started off really with an interest in that. I graduated and got a job and went back to grad school for what I do now.
I stayed on the Carbamezapine until a psychiatrist thought Depakote had a better side effect profile in case I wanted to get pregnant (really she thought this). I went on Depakote and off Tegretol. This was in 2002. At this time, I tapered off the Anafranil myself because it was so sedating and I experienced flu like symptoms and all those electric shock-like sensations that are now known as antidepressant withdrawal syndrome. I knew it existed by experience 10 years before there were label warnings.
I switched psychiatrists for an arbitrary reason at some point and followed with this psychiatrist for 15-20 years until recently. I came to realize that he was very convinced that people are their DSM diagnosis and don’t have a chance at recovery off drugs or without them. He at one time diagnosed me with ADHD and tried to put me on Strattera which I think I took one pill of and I felt revved up. It was uncomfortable and scary. He also tried to put me on Zyprexa which made me feel crazy so I didn’t take either drug for more than one or two doses. I always thought the test he gave me for the ADHD was particularly peculiar way to diagnose someone with something that seemed like a bizarre illness to begin with.
Anyhow I went on living my life doing pretty well not realizing that some of the things I experienced for years were side effects of the Depakote. I was told I had a serious illness that required drugs for life. What I was told in essence was take the drugs or go mad. Not exactly a great choice. Going mad isn’t fun, I’d already been there and never wanted to go back so I took the drug that supposedly was “fixing” my brain.
I had sedation, nausea, agitation, anxiety, heat intolerance and temperature deregulation, Raynaud’s Syndrome (full fledged white blue red) in response to cold stress exercise and livedo reticularis, butterfly rash across cheeks, restless leg syndrome, hair loss by clumps (thank god I have a lot of hair), diarrhea, light colored stools, heart palpitations and shortness of breath. That’s only the tip of the iceberg.
I am an athlete and continued running, bike riding etc and then about 4 years ago noticed I had reduced exercise tolerance and felt short of breath. I went to a pulmonolgist who did a workup and diagnosed me with exercise induced Asthma. At that time, an echocardiogram was done and showed some mild heart failure. They never mentioned this to me, but I saw my test results.
Flash forward 2 years later and while climbing down my staircase I hopped over a baby gate and landed on my foot wrong. I fractured quite badly my fifth metatarsal in my mid foot. I passed out from pain, it was 5 mm displaced (almost through the top of my foot) and went to the ER to have it reset. They numbed me up pushed the bones back in place and casted me for eight weeks of non-weight bearing and crutches.
I have a pretty high pain tolerance and only took a small amount of Ibuprofen for pain (maybe 600 mg daily) and some Zantac because the Ibuprofen bothered my stomach. Then I started getting really sick. I would have episodes of dizziness, feeling like my heart was stopping, like I was going to die or pass out, nausea, emotional lability, anxiety, memory loss, insomnia, sedation at other times, high blood pressure (my pressure is usually 90/60s). I went to a few different ERs several times. No one could figure out what was wrong with me until one ER doctor checked a Depakote level but never told me it and sent me home not knowing what was wrong. I looked at my test results when I got home and my level was 100 which was quite high for me. I called my psychiatrist and he didn’t know why it was high.
I started investigating the pharmacology of the meds and figured out the Depakote could in fact interact with Ibuprofen and the Zantac and at the higher level of Depakote – I was taking 1250 mg a day – in fact was probably part of the issue. My doctor had switched me from the ER Depakote to the DR years earlier because of insurance and I came to find out that the DR needs to be dosed differently and it was dosed the same by him. So I was getting more Depakote all along than I previously had. I probably wasn’t as good at getting levels checked as I should have been but I was the patient not the doctor and he didn’t tell me now important a level was before he gave me a script.
I kept getting sick and went to a different ER. I was thinking it was my drugs. I started reading about hyperammonemia. At my prompting, an ammonia level at a different hospital ER visit was checked and was high – almost 70. Of note on all these ER visits my Na was in the 130, 129 range, my TSH was 10 with a normal T4 – on the FDA insert there are reports of altered thyroid function – “of unknown clinical significance”.
I was terrified and told my doctor who had never heard of this.
I stopped the Depakote.
Next week – Coming off Depakote
susanne says
Hi – someone who comments on the blog suggested a while ago that book could be published to include horrendous experiences such as your own The way you expose such detailed expert information aboutthe drugs which were prescribed is so impressive. If possible could you say whether you had access to your medical notes? Would requests have been obstructive?
What I cant find out by googling is -Have we the right to publish our own medical notes in full if we redact the health workers’ names?
In UK we have the right (with caveats) to hold our records . Many just take on trust they will be accurate or are embarrassed to ask -I think if more people did and kept updating requests there could be an opportunity to see when the relationship with a profession and the prescribing and the diagnoses, are going wrong and heading into being destructive with harmful consequences on future contacts with medics and with employers. Most seriously on our health prospects.
I have also noticed re the following that there is massive amonts of our information being shared with NHS digital but no opportunity for us to add anything or if the few who do add anything to their notes – if this being included in the collections designed to ‘improve our health’. That dear health providers is not possible without accounts such as detailed here and elsewhere on the blog. It is in the public domain and as far as I know free for you to use.
A massive ommission from published case reports is that they are one sided – either the individual is inevitably ‘forced’ to recount experiences without a medic or other healthworker agreeing to take part or the healthworkers report without verifiable information in the form of signed inclusion by the ‘talked about’.
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The National Back Office (NBO) provides a national data quality service. It’s responsible for the management of NHS Numbers and Personal Demographic Service (PDS) records, investigation and resolution of data quality incidents on demographic records. The PDS is the national electronic database of NHS patient details such as name, address, date of birth and NHS Number (known as demographic information).
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Please download a subject access request form, fill it in and return it to us using the contact details on the form, along with copies of information that confirms your identity. Please do not send in any original copies of documents.
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Last edited: 11 June 2019
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mary H says
Your detailed notes of your “journey” are indeed impressive. It is quite remarkable to read of all the tests etc. that were undertaken and your understanding of their results. I wouldn’t have a clue if faced with any of them.
Susanne mentions the idea of collecting such stories as yours and publishing a book of them. I had mentioned that a while ago and I think that Heather R. has also mentioned such a venture with profits going to RxISK. That you have gone through so much pain and, obviously, kept copious notes – I can’t imagine that all that knowledge was retained during your illhealth! – needs to be brought to the attention of the general public. We, who read the posts here, understand full well that these drugs can cause havoc BUT, try as we might, we find it almost impossible to awaken people in general to that fact. Your story could be the story of ANYONE unfortunate enough to be prescribed these drugs – but it isn’t the tale of what happens to EVERYONE who takes them. There lies the problem, I guess – we fail to believe the reality until it hits one of us or our loved ones.
I think that the dearest wish of us all here is to warn others of the possible consequence of blindly swallowing prescribed medications without fully understanding the possible outcome. I look forward to reading about your withdrawal from Depakote in the next post. Thank you for sharing your story with us .
susanne says
Like Mary I wouldn’t have thought of asking for my file or of making notes until late on when I realised I’d been naive to trust medics. I was given my file to read after massive obstruction and made comments throughout before giving it back. It was then claimed to have been ‘lost’ along with two others.
In the meantime have checked with Information Commissioner’s office. They have a Live Chat option , It took a bit of a push to get them to understand I was asking in general not with regard to mine or anybody else’s information – there is no need to give personal information when requesting advice . advice. They confirm that copies of medical notes can be published as long as there is no way of identifying other persons in any way. Redacting names might not be enough but to get around but this some level pseudo-anonymity can be used, and is used by medics and others ,especially therapists, who publish our information including in books for public sale and private gain.
This is quite useful as a guide
At a glance
Understanding whether you are processing personal data is critical to understanding whether the GDPR applies to your activities.
Personal data is information that relates to an identified or identifiable individual.
What identifies an individual could be as simple as a name or a number or could include other identifiers such as an IP address or a cookie identifier, or other factors.
If it is possible to identify an individual directly from the information you are processing, then that information may be personal data.
If you cannot directly identify an individual from that information, then you need to consider whether the individual is still identifiable. You should take into account the information you are processing together with all the means reasonably likely to be used by either you or any other person to identify that individual.
Even if an individual is identified or identifiable, directly or indirectly, from the data you are processing, it is not personal data unless it ‘relates to’ the individual.
When considering whether information ‘relates to’ an individual, you need to take into account a range of factors, including the content of the information, the purpose or purposes for which you are processing it and the likely impact or effect of that processing on the individual.
It is possible that the same information is personal data for one controller’s purposes but is not personal data for the purposes of another controller.
Information which has had identifiers removed or replaced in order to pseudonymise the data is still personal data for the purposes of GDPR.
Information which is truly anonymous is not covered by the GDPR.
If information that seems to relate to a particular individual is inaccurate (ie it is factually incorrect or is about a different individual), the information is still personal data, as it relates to that individual.
In brief
What is personal data?
What are identifiers and related factors?
Can we identify an individual directly from the information we have?
Can we identify an individual indirectly from the information we have (together with other available information)?
What is the meaning of ‘relates to’?
What happens when different organisations process the same data for different purposes?
In more detail
What is personal data?
The GDPR applies to the processing of personal data that is:
wholly or partly by automated means; or
the processing other than by automated means of personal data which forms part of, or is intended to form part of, a filing system.
Personal data only includes information relating to natural persons who:
can be identified or who are identifiable, directly from the information in question; or
who can be indirectly identified from that information in combination with other information.
Personal data may also include special categories of personal data or criminal conviction and offences data. These are considered to be more sensitive and you may only process them in more limited circumstances.
Pseudonymised data can help reduce privacy risks by making it more difficult to identify individuals, but it is still personal data.
If personal data can be truly anonymised then the anonymised data is not subject to the GDPR. It is important to understand what personal data is in order to understand if the data has been anonymised.
Information about a deceased person does not constitute personal data and therefore is not subject to the GDPR.
Information about companies or public authorities is not personal data.
However, information about individuals acting as sole traders, employees, partners and company directors where they are individually identifiable and the information relates to them as an individual may constitute personal data.
What are identifiers and related factors?
An individual is ‘identified’ or ‘identifiable’ if you can distinguish them from other individuals.
A name is perhaps the most common means of identifying someone. However whether any potential identifier actually identifies an individual depends on the context.
A combination of identifiers may be needed to identify an individual.
Other factors can identify an individual.
Can we identify an individual directly from the information we have?
If, by looking solely at the information you are processing you can distinguish an individual from other individuals, that individual will be identified (or identifiable).
You don’t have to know someone’s name for them to be directly identifiable, a combination of other identifiers may be sufficient to identify the individual.
If an individual is directly identifiable from the information, this may constitute personal data.
Can we identify an individual indirectly from the information we have (together with other available information)?
It is important to be aware that information you hold may indirectly identify an individual and therefore could constitute personal data.
Even if you may need additional information to be able to identify someone, they may still be identifiable.
That additional information may be information you already hold, or it may be information that you need to obtain from another source.
In some circumstances there may be a slight hypothetical possibility that someone might be able to reconstruct the data in such a way that identifies the individual. However, this is not necessarily sufficient to make the individual identifiable in terms of GDPR. You must consider all the factors at stake.
When considering whether individuals can be identified, you may have to assess the means that could be used by an interested and sufficiently determined person.
You have a continuing obligation to consider whether the likelihood of identification has changed over time (for example as a result of technological developments).
What is the meaning of ‘relates to’?
Information must ‘relate to’ the identifiable individual to be personal data.
This means that it does more than simply identifying them – it must concern the individual in some way.
To decide whether or not data relates to an individual, you may need to consider:
the content of the data – is it directly about the individual or their activities?;
the purpose you will process the data for; and
the results of or effects on the individual from processing the data.
Data can reference an identifiable individual and not be personal data about that individual, as the information does not relate to them.
There will be circumstances where it may be difficult to determine whether data is personal data. If this is the case, as a matter of good practice, you should treat the information with care, ensure that you have a clear reason for processing the data and, in particular, ensure you hold and dispose of it securely.
Inaccurate information may still be personal data if it relates to an identifiable individual.
What happens when different organisations process the same data for different purposes?
It is possible that although data does not relate to an identifiable individual for one controller, in the hands of another controller it does.
This is particularly the case where, for the purposes of one controller, the identity of the individuals is irrelevant and the data therefore does not relate to them.
However, when used for a different purpose, or in conjunction with additional information available to another controller, the data does relate to the identifiable individual.
It is therefore necessary to consider carefully the purpose for which the controller is using the data in order to decide whether it relates to an individual.
You should take care when you make an analysis of this nature.
Further Reading
Relevant provisions in the GDPR – See Articles 2, 4, 9, 10 and Recitals 1, 2, 26, 51
External link
In more detail – ICO guidance
We have published detailed guidance on determining what is personal data.
Carla says
Thank you for another insightful story, which highlights how one’s health can ‘down spiral’, if one gets on the wrong train.
Oh, how I wish I could go back in time and catch another train! One that is not thwart with obstacles, challenges and contempt.
Only the person who experienced such trauma can piece the puzzle together and truly make sense of the heinous ill health, one is left with by dubious medicines. Seriously, if our systems were so robust, people would not be getting hurt by random flawed batches.
I would love to get my hands on my medical files, dating back nearly twenty years ago and witness how much ‘tripe’ was documented. There would be no trace or evidence suggesting which one was the culprit because it would be blamed on a sinister disease coming out of the blues! (Of course, only the person on the receiving end would make the connection and understand that the meds played an important role in inducing ill health ~one that many would not concur with because it just goes against ones way of thinking! ~ totally preposterous!
I have written to the pharmaceutical companies.
I have written to many regulatory medical/government authorities and so forth and still NO ANSWER!
I guess, after all is said and done, they will continue to pretend that nothing has ever happened.
So ultimately, the blame is always given to the one who speaks up about dysfunctions in our systems.
It’s a crying shame when ‘NO ONE’ is prepared to CHALLENGE the ARCHAIC systems and processes that continue to pretend that nothing has ever happened.
Imagine, how many other people are out there in the same boat as I however, have no way of getting to the TRUTH because people have be marginalized, discriminated against or treated like second class citizens.
What would we do without whistle-blowers?
How embarrassing would it be if all those who tried to cover up the TRUTH were exposed and our good names, would be cleared for once and for all!
Stories like ours are priceless, indeed! ~ If only people listened and believed.
Will our stories become invaluable, like the diary of Anna Frank, once we are long gone or are they starting to make headways now?
annie says
Depakote is mostly well-known for highly-publicised birth-defects
https://www.cqc.org.uk/guidance-providers/adult-social-care/high-risk-medicines-valproate
Looking around for background on Depakote, this doctor discusses the less than well-known factors about this drug. He sounds well-versed in this drug and I wonder why, in this story, it was even contemplated to prescribe..
https://www.bing.com/videos/search?q=Depakote&view=detail&mid=D7D58F990385DFEE55D1D7D58F990385DFEE55D1&FORM=VIRE
and then, this comes along – give a dog a bone!
James Moore @jf_moore 12h
The mere fact that this article is necessary is deeply concerning… Serotonin Syndrome In Dogs: Symptoms, Causes, & Treatments – Dogtime http://po.st/6qeMBC via @po_st
https://dogtime.com/dog-health/56261-serotonin-syndrome-dogs-symptoms-causes-treatments
Dogtime…
Heather R says
Something that surprised me very much about Medical Notes is this: we are told that once inscribed with the worthy doctors’ opinions, they are set in stone and however much the subject of the Notes, (s/he about whom they’ve been written), asks to have them corrected when false, this is ABSOLUTELY against the rules and CANNOT EVER EVER E ER be done.
However, after a death or serious incident, when the relative or subject of the Notes (if lucky enough to have survived) manages after a long battle to get hold of them, the likelihood is that they will have been interestingly ‘edited’. A friend of mine who worked for. GP confided this, against pain of severe retribution. I simply could not believe it, not even when a GP friend also told me to ‘get hold of your son’s Notes before ‘they get a chan e to change or re-write them.’
Well, as all of us who are realists know, you can only get those Notes when they are released to you, unless I guess you mount a bank robbery-style operation, and that would require inside knowledge and maybe a black boiler suit and a helicopter. Or even better, an invisibility cloak. I did fantasise about this during the many weeks in which I waited for my dead son’s Notes.
When they arrived, they did differ (a) from the true facts leading to his death and (b) from an earlier set of his Notes that I’d had when we’d been sheep farmers and concerned about the effects of nitrates in the bore hole well from which we drew our drinking water. (There was some degree of run off from adjacent fields). So I had two sets of Notes to compare, for the same young person. And guess what, folks, they did differ here and there.
So, how come they can be tiddled around with by the powers-that-be to mount a cover up, but not changed when patients themselves protest that certain written facts there are incorrect. These Notes, let’s face it, can affect ine’s Life prospects in so many areas of one’s existence.
I’m all for getting together a book of anonymous personal accounts of ADRs. If I wasn’t so busy currently fundraising to get our son’s Arts and Creativity Centre building finished as he had wanted before he died, I’d offer to collate, edit and facilitate the self publication by a group of what has the potential to be another mind-blowing book.. I would advise anyone who can, to write a very careful considered account like the one on this Blog, and put it ready in a safe place for future use. You should always write stuff down as soon after it happens as possible, to keep accurate, as it’s amazing how quickly memories can get distorted, especially when battling grief. Keep a diary. Very valuable. Photograph pills and their labelled packages and analyse the information therei
Good luck with it all. The outward power may seem to rest unassailably with the ‘Important Others,’ but the REAL power rests within everyone if they only believe it. The better your motives, the bigger the chance of effecting change.
Don’t forget too that we are now fast approaching another ALL SOULS NIGHT on November 1st and 2nd, so get your candles and photos of loved ones ready, to light on that evening, whilst we think of those that have gone because of ADRs, and those we hope will continue their recoveries, so they can spread the word in their written testimonies…. the book is a great idea, there could be a series….like a kind of patients’ DSM maybe, adding more each year. Sell to raise funds for the RxISK Prize.
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susanne says
A lot has changed with regard to Rights and Medical Records . In 2020 we are supposed to having the right to access historical records as well as current ones. The Royal free pulled the biggest fast one in history by handing 1000’s personal records over to Google (prev Google Deep Mind) They cannot bring themselves to make a genuine apology but they have been forced to take the actions below./Royal Free NHS Foundation Trust update, July 2019
Date
31 July 2019
Statement
In July 2017, following reports concerning the use of Google DeepMind’s Streams application at the Royal Free NHS Foundation Trust, the ICO announced that the processing of personal data within Streams was not compliant with the Data Protection Act 1998 – the relevant data protection law at the time. Having identified several shortcomings with the data processing, the Trust signed an undertaking committing it to bringing the processing into line with data protection laws, including the new General Data Protection Regulation (GDPR) and the Data Protection Act 2018.
The actions the Trust was asked to complete included establishing a proper legal basis for future processing, making sure future developments also comply with the common law duty of confidence, and completing a privacy impact assessment. We also agreed that the Trust would commission an independent audit into the processing of patient data that had occurred during the implementation of Streams.
The ICO can now report that the Trust has completed the actions required, both in response to the requirements set out in the undertaking, and to meet the concerns to addressed in the audit.
On matters relating to the data protection framework which we regulate, the Trust was able to demonstrate that the GDPR principles of proportionality and necessity had been considered and that the processing of large volumes of data was required during phases of clinical testing to ensure patient safety.
It has also taken steps to complete a data protection impact assessment (DPIA) as required by the new legal regime, and improve privacy information to its patients. We are therefore satisfied that the Trust is complying with its data protection requirements and we have no further outstanding concerns regarding the current processing of personal data within Streams.
During the audit, separate concerns were raised around the legal view on how the common law duty of confidentiality – often referred to as a ‘duty of confidence’ – could be satisfied during the clinical testing of Streams. The ICO found the approach – proposed in the audit, which focused on the clinician’s conscience rather than on the patient’s expectations, was inconsistent with current accepted thinking. Whilst common law matters fall outside of our regulatory purview, we are very aware that clinicians and developers are seeking regulatory clarity on the interplay between the duty of confidence and the data protection framework.
Greater clarity is needed and we are committed to working with other bodies including the National Data Guardian and Health Research Authority, to improve guidance and support to the sector so that healthcare organisations like NHS Trusts can implement data-driven technology solutions safely and legally.
Finally, ahead of the transfer of Streams from DeepMind to the new Google Health Unit, the ICO has made it clear to controllers using the Streams service that they will need to have the appropriate legal documentation in place to ensure their processing is in line with the requirements of the GDPR. Organisations must assure themselves and document how they have taken appropriate steps to mitigate data protection risks beyond contractual obligations and the obligation on Google Health under data protection law, such as audits, reports and other appropriate measures
The Information Office (on Live Chat) is the best (or easiest as there is masses of info to wade through by now) go to for information on erasure and amending records. We still can’t erase but we can add /amend records. The thing is it is vital to get hold of the records with a simple request to the manager of a surgery or other health providers ie I would like a copy of my health records please. Only then can they be checked and amended so that incorrect information (to say the least) is not as likely to be perpetuated. Importantly when records go digital it won’t be easy for clinicians to ‘edit’ the notes and a trail of where they go is kept..therefore less ability for files to go ‘missing’ when requests/complaints are in the air. The ICO’s statement above is encouraging ‘The ICO found the approach -proposed in the audit, which focused on the clinicians’ conscience rather than the patients’ expectations was inconsistent with current accepted thinking’.