As a carer to my dad leaving hospital after a nine week stay, the doctor shows me his prescription – a whopping twenty two separate drugs are on his list – many of which are not pills but are inhalers, injections, patches, liquids and gels. Items which a pillbox cannot help me with. I quickly realise that I am going to need something to help me manage these medications at home so I ask the doctor can he give me anything to help. He looks at me forlornly and apologises as he says they don’t have anything like that available from their hospital. He recommends that I go online as there may be solutions available to help me there. I quickly try to access the internet in the hospital from my phone only to realise that there is no internet (seriously!) so when I go home I type into Google “medical health records”.
Upon hitting the return key, I see this particular phrase showed 30 million results!
Surprised with this, I decide to change my text and type in “Medicine Health Record” – it shows 18.5 million results. I try to narrow it down:
Medicine Record – 284 million; Medicine Diary – 20.8 million; Medicine App – 151 million results; Medicine App Ireland – 1.26 million results
At this stage, frustrated and after using numerous other phrases, I realise time is against me (my dad is coming home the next day) and so I start panicking. After scrolling through so many different solutions available online, I am none the wiser and know that I do not have the time to figure out 1) which one would work best 2) how to use them or 3) which one would work for my family also.
So, I resign. I find my own little notebook to track the times, types and doses of my dad’s medications. Little did I know that this notebook, would end up saving my dad’s life and upon realising same, after four years of development with over 200 health professionals, patients and carers, it would become a project known as MediStori.
My Personal Bias
Okay, so you may think I am biased when it comes to the topic of electronic versus paper based records in health systems, because of my own project, but I am here to tell you this is not the case, not at all. Using my personal experience as above as an example, it shows that I would have had no problem in using an electronic record to help me with my problem. Technology was the first thing I was recommended to use, and the first thing I went to, to help me. I just didn’t adapt any of these technologies because of the sheer volume of solutions made available to me. I was completely confused as to which to use, and time was not on my side – as it the case for most patients and carers. I had always intended to develop my project digitally. I just always wished the health professional knew something of which he at the time felt comfortable enough to recommend to me. I still couldn’t understand why there was no one amazing patient health record that everyone knew about.
This blog, however, is not about just about my views on health records, I use this as an example to show what the reality is. This post is about my views on how I feel unhealthy competitive cultures and lack of user involvement within public and private sectors can disrupt and hinder connected health in our systems.
The situation of trying to track medications was not the first time this had happened to me. I am unfortunately extremely experienced in using health services and self-managing conditions, because not only did I provide care for my late dad, but I also provided care for myself and others in my family. Excluding my work in healthcare over the last four years, I have used over twenty separate health services in the past ten years across the country; I have engaged with over 12 specialists for my children and over 15 specialists for the rest of my family. I have used over 8 hospitals and countless GP practices and pharmacies.
And what have I noticed?
Every one of these services do the same basic things BUT in completely different ways. Whether this is related to the way I have to check in upon arrival; the way they provide customer service; the way they communicate; the types of meals they serve; the information they provide about conditions; the management of waiting areas or even how they prescribe drugs – they are all done differently.
And this, for me, is a problem.
Living with Conditions
Medicine usage in our life is part of our norm. Appointment management and communication of health information is the bane of our lives. Too much information is not what I need – I just need accurate, two-way and timely information. I also do not just need information – I need something to help me practically manage treatments, medications and symptoms in the home. As a patient and carer, upon attending health services, I am already anxious about my health visit – the last thing I need is to start learning how to navigate my way around a new system, a new way of doing things, each and every time.
Disconnected Health Information
Confusion caused by the communication of health information has to be the biggest problem for me as a patient and carer. Here are some examples –
“I remember once receiving a lovely little white folder for my daughter from her specialist hospital in Dublin. It was specifically made by the hospital, alongside a charity – for her specific condition. I could log her growth charts, her feeds, her diagnosis. I loved it. About two months later however she ended up being admitted to our local general hospital. I took out her diary to show her health professional but I was told to put it away because they didn’t use that diary there – I was told it was only for use with the specialist teams in the original hospital. Truthfully, I was really embarrassed at the time. I put my diary away and I never used it again after that, as she was mainly treated in the general hospital from that time onwards. I also realised as time went by and she developed other conditions that realistically this diary was only disease specific. It would not suffice to manage the symptoms that arose from her asthma or hypermobility. I felt it would be a good idea if there was some diary which would cater for a person’s personal information and needs first, and then specific disease diaries could be implemented as the need arose – building a health record from birth to end of life, not gender, age or location specific.”
“On so many occasions, I became so frustrated with the fact that none of our hospital records were shared with one another – I would have to repeat information over and over again, to different health professionals each time. I would be asked questions about symptoms at home and often found it difficult, with limited time, to recall everything. Many times I left the hospital forgetting to say important things, and only remembering afterwards what I had left out. Often, I left appointments feeling confused and still concerned. Many times I was afraid for other family members to bring my children to appointments as they wouldn’t know the information. The burden was all on me.”
“I do not know how many different times I have gone to a hospital and seen loads of different types of leaflets – on the same condition! It is bad enough I am trying to absorb information from our specialists, but it’s even more difficult trying to figure out what information to trust from leaflets designed either in house or by non-profit or private companies.”
“Don’t get me started on medications – generic, branded – variations of branded drugs. I get so confused when I’m handed the same drug with a different name, bottle or format in how to administer it.”
I am a 35 year old mum – and am extremely tech savvy. I personally could not do my work; I could not connect with people in the industry; I couldn’t have won all my business awards without technology. On a personal level, I could not pay for my parking; catch up on TV shows or even do my shopping without technology.
I don’t just love technology; I absolutely need it. Without technology, I could not share this document with you. But, and there is a but, I also love paper. Even in college, I did not like reading books on my tablet, and when researching documents, I always printed them off and used a highlighter when taking notes.
I often find that health professionals are the same. They prefer if I print photos of rashes or birthmarks than show them on my phone. If I have questions or information written in front of me, they are not sitting there frustrated while I scroll through my phone looking for same. And they can photocopy it if required.
The reality is – this is not just me.
International internet marketing guru Seth Godin talks about the benefits of a one sheet medical history diary and Bryan Vartabedian a pediatrician at Baylor College of Medicine/Texas Children’s Hospital and one of health care’s influential voices on technology and medicine responds with:
“As much as it kills me to admit it, there’s a certain amount of wisdom to this. And not novel, really. Patients of mine have been doing this for years.”
Even the RCPI in the UK decide not to abandon their paper record even though they’d developed an electronic version:
“There is no intention to withdraw the paper PCHR as it is important that parents have a choice in how they access information.”
The reality is that it is not that hard to connect health information. The RCPI’s little booklet is a perfect example of this – even if it does only cater for children. This is because we actually do have one common denominator in our health ecosystem which can deliver this.
This is the patient.
They are the only one who sees every health provider relative to them. They know what happens to them at home, at their last clinic, at their last admission. They know their symptoms. And how they manage their medications and treatments. In the cases where they don’t know, you can be sure that their carer does.
So now that we know that we have one common denominator in our health ecosystem why has nobody done anything to use this amazing connector – to connect our system? Instead the system still wants to build around them. And instead of thinking simple – it gets more and more complex the more people see an opportunity to get involved – and we are all left with so many solutions, but not knowing which one is best to use; or for health professionals, which one is best to recommend.
Culture Change = Connected Change
Healthy competitive cultures are when people who really care about what they’re trying to achieve, and work with others to get the job done. They join their brains, their ideas, their teams, their money and their solutions together. And the competition they have is simply to strive to perform better to increase positive patient outcomes – it is not about winning. These people are leaders in the fields of healthcare. An excellent article from the International Journal of Health Policy and Management explores this in more detail, highlighting that:
“..Competition is more and less likely to be a good tool to achieve benefits, rather than whether or not it is “good” or “bad,”
Unhealthy competitive cultures are when people or teams try to outdo one another, and look at the negatives of other solutions, for personal gain – be it profit, pride, positions or power. Often, these individuals take someone else’s idea and try to replicate it. And while in the business world, this is natural, in healthcare, this should not be the case.
People need to work together for the same vision – to reform healthcare as we know it – together. Yes, choice is good, but I stand by my point: unhealthy competitive cultures can impact negatively on patients. We need these 4 “P’s” to be changed and implemented using the P4 Medicine Institute Model: Personalized, Predictive, Preventive, Participatory.
So I am striving forward to collaborate with other like minded individuals and my call to action is this…
If you really say you deliver person centered care, with the patient truly at the center, will you try to join forces with others in your field with an aim to create a “super solution” that connects all health information, and more importantly creates a unique movement of personalised, predictive, preventive and participatory care?
Will you do what you can to work with and help patients and carers like me, change our health system together?
If so, let me know how you get on with your journey of collaboration.
Because remember, we are all here to either get better, or to help someone else get better.
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Bio: I am a patient myself with multiple conditions and am a mum of three daughters who have each had complex illnesses including congenital heart defects, juvenile arthritis, hyper-mobility, asthma, psoriasis, sporadic blood pressures and gastrointestinal disorders, to name but a few. My husband suffered a TIA in 2014; I cared for my late dad who was on twenty medications and my mum currently also has a rare condition.