So as many of you know by now, we are expecting our fourth little baby later this year. My husband and I, along with our beautiful daughters, are so excited with this new arrival and as we prepare for the changes in our home, I feel all sorts of emotions on a daily basis.
You see, it has been a long time since I have been pregnant (11 years to be precise!) and truthfully, in many ways, this feels like my first all over again! But in many other ways, I feel alert and aware and am so glad to have my age and past experiences of being a parent on my side now.
At the beginning of this pregnancy I was given an A4 paper based health record file to bring home with me. I was told to bring this record to every healthcare appointment I attended – to be shared with health professionals in hospitals, with my GP and the many other health professionals I visited. This paper based record (which I carry on me personally) contains very detailed and personal information about me, as written by my health professionals.
My date of birth, address, phone number, next of kin, blood type – and all of my own and my families health history – is there to be seen with anyone I share it with.
Now this may ring alarm bells for “data protection” advocates BUT I want everyone to know why you need to turn off that mode for a few moments.
This record was created for the simple purpose of patient safety, yet it does so much more than that. It recognises the importance of patients having information to hand at every point of their care – and that patients are completely capable of accessing, storing and managing their health records.
It also recognises that the patient is the only common denominator between all of their health services, and as they are the ones meeting all their health professionals, then it is only obvious that they should have the information on them to hand at the point of care.
I currently use four hospitals for my prenatal care: Mayo University Hospital [Mayo], Mater Private Hospital [Dublin], Bons Secours Hospital [Galway] and Holles Street Hospital [Dublin]. Each time I visit them, I bring my health record with me. Every health professional can see my up to date information, the last notes that were written about me by my health professionals and they can also see other information such as my blood results and scans. They too can each write their own notes into this file, meaning when I go back to my obstetrician or GP they can see immediately what was said and the possible plans for me for going forward.
Better still, I can see these notes too.
I can add information about myself into the designated section and I can question it if I am unsure about anything. None of the health professionals I meet have to ring anyone to get my information; they don’t have to log into separate EHR systems; nor do they have to just rely on me for my information (which quite often, with baby brain syndrome!) can be hazy at the best of times.
I, as a patient, am trusted with this information. My health professionals trust me. I am trusted to mind it, to keep it safe, to access it.
And for me, that is what person centered care is all about.
Now that doesn’t mean that everything can not be improved upon and for this reason I pose a few questions.
- Would it be better if it was an electronic record that I could keep on my phone or PC?
Yes, probably. But practically speaking, would I not then have to hand over my phone to my various health professionals so they could access it? Would they have to navigate through each of the apps pages to get to the information they need? And could this be potentially time consuming? Additionally, if it were electronic, I worry about my record getting hacked or losing access to it – like what happened in the NHS? Where is the back up plan when this happens? Yes, you might ask me what happens if I lose my folder, like I could lose my phone – but I feel this risk is minimal – firstly, I look after it as much as I look after my credit card; secondly, it is only one record put in one other persons hands – not millions of patients records, left in millions of unknown peoples hands; and furthermore, my main health professionala already have my records stored on their electronic systems as is.
- So, would it be better then if I didn’t have the record at all and only health professionals could see it?
No, I personally do not think this is the better way to go. And there are two reasons for this. Firstly, I feel I should be able to access my data at any time given and be completely aware as to what information is stored about me.
After all, if I am capable of growing a human being inside me, why can’t I be capable of looking after my health records?
Secondly, not all health professionals electronic health record systems (EHR) in Ireland are interconnected. While a lot of work is being done to achieve this in the HSE, I still have concerns over what happens in the mean time? For example, if one EHR is installed in one maternity hospital at a time, and the paper based record is removed on the back of this, what happens when I use an additional hospital and they have no access to my records if they haven’t had the EHR installed yet? Will my GP be able to access, log in and input information about me or will they just receive a summary sheet? And what about private health professionals – will they be allowed to access a public system EHR to access information for their patients? Or if I had to travel to a specialist maternity service abroad – what would happen then?
I personally love technology and I can’t wait for an interconnected health system, but we still need to make sure no-one falls through the gaps in the meantime.
One way of ensuring that patients are not put at risk while this exciting transition of integrated records is taking place is to ensure the paper based record is not removed until all hospitals and primary care facilities are connected to the same system. One solution could be as simple as printing off the information from the EHR and popping it into the patients folder. And even when this is done, that a replacement for this patient held paper based record needs to still be available in a user friendly electronic application.
The data is, after all, my information, and I should still be able to see it. Especially if I use services which are not in the public system, or in Ireland.
But there is one more thing that still bugs me.
After my baby is born, I have been told that I will not be allowed to keep this record, nor will I be given another health record to bring with me for the future – even though I have multiple chronic conditions. I don’t know what happens to this maternity record nor do I understand why I can’t be trusted to keep my records after having my baby (even though caring for a baby is the biggest responsibility a human can have!) Why do all patients, people or families not have the same opportunity to keep their records, as women do when pregnant? I would still see all my health professionals (plus my baby’s!) and they would still need information about me and my family, would they not?
Why is there then a sudden shift in the reasoning for carrying ones own health record? Why are we suddenly mistrusted after pregnancy with accessing and storing this information?
I know I would never have had to create the MediStori if I had been allowed to keep my own and my families health records together. Everything would have been there to hand when I needed it and I could ensure all information was correct. I wouldn’t have to repeat my medical history over and over again when meeting new health professionals. Or try to remember the last time I had an appointment or a scan.
The MediStori is all about family-centered care and people can put in or leave out any information they want in it. Much like the maternity record it understands the fundamentals of the patient being the only common denominator. It is not disease specific, instead it helps people manage their health holistically – appointments, symptoms, medical history, medications and so on. It is used from pregnancy, birth, childhood – right up to end of life. And you don’t have be sick to use it.
When I received my maternity record I was so grateful as I thought it did the exact same thing. Except for the fact that it is only for a certain time in one’s life, and would be taken away from me as soon as that period was over. or could be taken away altogether on the back of EHR’s in health services.
I have worked in the healthcare domain for many years now and I have gained a lot of knowledge in preventative healthcare and personal health information. I always practice what I preach when working on the MediStori: person and patient-centered care at all levels are critical in the delivery of, not just healthcare, but most importantly right now for me, the safe delivery of my baby.
But after baby, comes a mum, and it is then, more than ever that a mum, dad and a family need as much support and resources that they can get – and having vital information to hand is just one of those things. Vaccinations, public health nurse visits, baby weights, vitamin D doses, development and growth charts, health screenings – the list goes on when minding a healthy baby.
It is not just “sick” patients which need help – parents too need to ensure they are empowered.
And it is critical to know that empowerment is not about anyone having power over another – it is about partnerships.
Partnerships, built on trust.