There’s bits of me all over the place.  There’s plenty bits of you too.  This post is about data protection and rights to personal information, and is a kind of natural progression from a previous post I wrote describing my frustration and incredulity of being refused access to my medical x-rays.  Thankfully, recent changes in UK law have now made accessing personal information a legal right.  However, as I recently  discovered, a legal right of access does not automatically mean a simple seamless process.

The Data Protection Act of 2018 now grants the following rights to individuals regarding their personal information:

• be informed about how your data is being used
• access personal data
• have incorrect data updated
• have data erased
• stop or restrict the processing of your data
• data portability (allowing you to get and reuse your data for different services)
• object to how your data is processed in certain circumstances

(Source: https://www.gov.uk/data-protection)

Obviously, the somewhat alarming reality in which we live is that there’s shitloads of data held about every single one of us in a seemingly infinite number of systems for a multitude of different purposes, and most of us are completely unaware of who is collecting and storing our data and for what purpose.  I imagine it would be an impossible task to locate all data held about us, and then tweak it to our personal permissions according to the above criteria of the new Act.  That is certainly not my purpose here.  My interest in the new Data Protection Act is that it now grants me access to personal medical information which was previously denied to me, so I have quite a task ahead of me in accessing and collating it all.

Over the past couple of months, I have made some progress in my crusade for personal medical information.  I have experienced an unnecessarily protracted and frustrating hoop-jumping exercise before managing to get copies of some more recent x-rays from one hospital, and am in the throes of trying to access further x-rays from a different provider but so far have made zero progress with that.  But hey, I am determined, stubborn and have plenty time at present so I will continue to request and nag and fill in however many forms they throw at me in order to get what I want.  So yes, the Data Protection Act has helped in some respects with this; medical providers can no longer refuse outright to share that information with you, but it seems they are not obliged to make it a short or simple process.

A few weeks ago, I decided to get the big guns out and request access to my medical records.  I wasn’t sure where to start, so asked my GP.   I received a positive and relatively encouraging response, so hoped the actual process would be equally smooth but apparently not.  The procedure at my surgery so far has been as follows:

• ask GP if it is possible to have access to medical records
• tell Reception I want to access my records
• await telephone call from someone who instigates the process
• complete telephone conversation, then go back to surgery to collect the Information Pack
• read the Information Pack, complete the attached questionnaire and return document to surgery
• surgery staff check questionnaire responses and screen my ‘suitability’ for access: ‘competence’, whether I am listed on any ‘at risk’ registers, whether accessing my records could have a detrimental effect on my physical or mental health, whether having access would put me in a situation where abuse could occur, (etc etc).  Should Safeguarding be identified as a result of sharing records, access can be denied for the protection of the patient.
• if I survive the above screening process, I will be invited in for a face-to-face meeting with the Business Advisor to discuss the implications of access, and to have an ID check.  Then the Advisor will make a decision – apparently this could take several weeks, since no staff are allocated solely to dealing with requests for access.

Evidently, medical providers are nervous about unleashing information which has previously closely guarded and secure within their systems and buildings.  But what are they afraid of?  Is it that they don’t trust us to keep our own information confidential?  Is it that they see us as too ill-informed to understand the medical information recorded about us?  Is it more a fear that their professionalism and levels of knowledge and skills could somehow be seen to be diminished or undermined once Joe Public gets hold of his / her records?  Or perhaps it could be the fear of litigation resulting from poor judgement or error leading to legal proceedings?  Medical records have most certainly been fiercely guarded for as long as I can remember (and rightly so) thus reinforcing the kind of god-like status which some medics seem to acquire in the eyes of both their patients and their staff; enabling access to medical records could certainly burst a few bubbles.

But requesting access to your medical information shouldn’t necessarily be seen as a negative step.  Medical information about yourself can, and should, enable an individual to better understand their condition(s) and therefore better manage their symptoms, and I would expect that most people who request access to this data have good reason for doing so.  In my case, I want access to clarify something which I have wondered about for decades.  The first surgery on my left leg was performed when I was a child (I was around 9 or 10 years old) and I don’t honestly know what the procedure entailed.  At the time, I was told that I had torn a cartilage in my knee and had surgery to remove it.  I want to know the name of the procedure and what was actually done – was the raggedly cartilage removed and the rest left in place, or was the whole lot taken out?  If the latter is the case, then this could account for all the subsequent problems I have had with osteoarthritis over the years; if only the torn areas were simply trimmed away, there would be less reason to pinpoint the procedure as the reason for the aggressive osteoarthritis which I have developed since.  When questioned about the rapid pace of development of my arthritis, consultants deny or avoid the question of whether it is related to my historic knee injury, yet lower ranking medical professionals remain astonished that I have three joint replacements at my age, and two have been urgently needed and performed within the last 12 months.  My intention is not to apportion blame or start legal proceedings, it is simply to gain a greater understanding of what has happened with my body and why it seems to have gone so badly wrong.  The surgical  procedure performed when I was a child is the most obvious culprit and could have impacted on my on-going problems with arthritic deterioration in my joints and, perhaps most importantly, could indicate whether I have any other nasty surprises to look forward to in the near or more distant future.  Alternatively, it may have no bearing and my condition could have developed independently.  Until I know the name of that early procedure, I cannot even begin to consider the implications of it, if indeed there were any.  Accessing my records may or may not provide any answers to these questions, but I think they are the best source of information that I can hope for in my quest to better understand my condition.