Unhealthy Competitive Cultures Can Impact Negatively on Patients

My Problem

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”.

My Confusion

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

google-search-medical-records

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.

My Experiences

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.”

Technology Users

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.

Reality Check

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:

ePCHR

“There is no intention to withdraw the paper PCHR as it is important that parents have a choice in how they access information.”

Connected Health

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.

 

Other articles related to healthy and unhealthy competition: 

Sports: http://www.howtolearn.com/2012/11/healthy-vs-unhealthy-competition/

Business: http://qideas.org/articles/when-is-healthy-competition-unhealthy/

Religion: https://www.theologyofwork.org/the-high-calling/blog/competition-healthy-or-unhealthy-constructive-or-destructive

Leadership: http://growingleaders.com/blog/competition-healthy-unhealthy/

Parenting: http://www.alfiekohn.org/article/case-competition/


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.

Speaking at the National Patient Forum 2015

At 7.30am last Tuesday, I found myself talking aloud in my car, en route to Dublin, practicing for a presentation that I would be delivering at the National Patient and Service User Forum that same morning. Looking back,  I was really getting into it and I quite animatedly corrected myself when I went off track by shaking my head and frowning– I’m sure if anyone saw me, they surely had an early morning laugh on my behalf!

Anyway, it was just as I said the words “collaboration is key” that my GPS decided to gently interrupt my thoughts to let me know that I was coming off the motorway unto a national road. I suddenly realised where I was and was surprised because I didn’t recall the two hour journey I had just made, being so caught up in my thoughts about the oncoming day’s events.

Now I realise this isn’t just me that goes on autopilot when behind the wheel– so many of us on a daily basis put the key in the ignition and off we go – allowing one part of our brains to change gears, indicate, look in mirrors, check on the kids in the backseat, chat to the passenger beside us, merge across three lane motorways – while the other part of our brain is thinking about what we’ll have for dinner that night.

But every day, regardless of whether we’re “in the moment” or not, we have to rely heavily on collaboration to get to our destination safely.  If you ever drive along a busy dual carriageway it can be fascinating to watch cars move in and out between the lanes and synergise with one another, as if each knows what the other is doing.

Added to this, more often than not, we presume that everyone will always abide by the rules.

Red lights, stop.

Bus lanes are for buses.

No mobile phones.

Stick to speed limits.

Now some of us stick by the rules, and some do not. We can question why and how some of these rules came into play in the first instance and can often forget the collaboration that is required to ensure millions of road-users can use the road at the same time…safely. Because we actually don’t know the next move of the driver in front of us, a proactive approach is required (like the seat-belt for instance), and many’s a time this comes about because of a reaction to a negative incident.

We need engineers for planning and to ensure our traffic lights are working smoothly; we need mechanics to ensure our cars are roadworthy; we need our council for sign and road markings; we need our Gardaí for governance; we need provisions made for accessible communications and we need educational campaigns to increase awareness.

Collaboration is the key to getting to our destinations safely – and all of these same structures, teams and approaches are required for a safer health care service too. It can be extremely difficult to understand and manoeuvre between all of the different services and teams but one thing is for sure –  we all need to take responsibility for ourselves and for every other road user too – always remembering to expect the unexpected.

So how do we keep on improving on services while preventing possible accidents along the way? And when accidents do happen, is it good enough to just put a “Danger Accident Black Spot” sign up and not actually change the structure of the road?

It’s simple – we need listen to what every stakeholder needs. We need to learn from the negatives and the positives – and then improve on the quality of services based on these needs.

So this is what the HSE’s Quality Improvement Division are aiming to do. One of the priority focus areas of this division for 2015 is person centered care and they want to ensure that the voice of patients, their advocates and representatives are heard, and are central to how they design and deliver their services.

Now with this being the first meeting of the Forum, I was quite fascinated to see so many diverse groups willing to give up their time and work together on behalf of their users, to help improve services. I felt it was good too, to have this first initial meeting to give everyone a chance to meet one another and to discuss what expectations the organisations themselves had of the Forum. The Quality Improvement Division’s hope going forward is that organisations can discuss and provide feedback on a range of issues of national significance that have an impact on the experience of patients and service users accessing our health services, and then this feedback, can be communicated to the relevant HSE divisions and clinical care programmes.

To open the day, the National Director of Quality Improvement, Dr Philip Crowley started talking about the importance of kindness in our health care services.  Yes, he said, there were many, many things that needed changing and the past few years of austerity had had its toll on health services across the country but that each and every one of us can still play our part by showing just a little bit of kindness to one another.

I sat there listening, meaning to take notes because I wanted to remember everything that was being said, but I stopped what I was doing because this is exactly what I think person centered care is all about.

Remember those rules on the road from earlier that we should all abide to? Now what would be the harm, if we just added a bit of kindness to them?

I know I am always grateful when the tractor pulls in to let myself and other drivers by. Or when a car flashes to allow me to cross the road safely. Or when someone offers to fill my tank at the petrol station. Or when the truck driver allows me to pull out of a busy parking space.

Kindness always restores my faith in humanity – and simply makes me feel better.

If we were to combine this simple approach with the right structures, teams and collaboration, in our health services, I really feel we could be on to something.

And this is what the Forum was made for. During the meeting we all broke into groups to discuss the expectations from the representatives and service users from the various organisations about the Forum and even though each table had different ways on how they approached the discussion, every one of them still had many of the same visions and hopes. This outbreak session was then followed by Public Health Doctor, Dr.Carmel Mullaney and I both showcasing separately, the different self-management projects that we are working on – thus showing how we can ourselves both work together in the ideal “patient plus professional partnership”.

After an interesting morning of discussions, Director of Advocacy, Greg Price, then closed the session and thanked everybody who attended, including his team in the Quality Improvement Division for their support.

At this moment, I looked around and realised that if everyone could really pull together on this one and truly collaborate then they would be showing our whole health service a level of kindness that could be truly outstanding.

Yes, everyone has their own or their organisations unique health issues to advocate for, but the reality is, no matter what type of patient you are, a lot of the time, the same issues come up, again and again – for each and every one of us.

And so as I always say–

We’re all here to either get better or to help someone get better…

Collaboration is Key.

(And kindness is an added bonus!)

 

[This blog was created on the June 6th 2015]

Overcoming Post Traumatic Stress Disorder [PTSD]

This is how I told my story at Heart Children Ireland’s National AGM…

“Hi my name is Olive, and I am a mum of three girls; Micaela Nicole and Mackensie.  I was going to tell my story spontaneously , but every time I practised doing it this way, my emotions took over and I forgot where I was, so today I am going to read it out to make sure I don’t skip over anything.

We, as a family, come up to Dublin quite often as each of my girls see different specialists in Crumlin, including their cardiologist, Dr Coleman. Thankfully they’re all doing great at the moment but it wasn’t always that way. About a year and a half after my youngest girl, Mackensie was diagnosed with her congenital heart defect, I was diagnosed with Post Traumatic Stress Disorder.

Now I know you’re just in the door and probably wondering why are we starting with such a sensitive topic but we felt it would be good to do it now just in case any issues arose and people could chat to each other or ourselves about it at lunch time. Deirdre, our psychologist is thankfully here today also and is happy to talk to anyone that wishes to do so.

I myself am here today in the hope that my story can help others. I wish that another parent had told me back then that we all react differently to our situations, that it was okay to feel the feelings I was having , that I wasn’t alone and that that there was loads of help available out there for when I was ready, not just to talk, but to even admit something wasn’t right.

So here we go: before Mackensie was ever born I was worried that things might not be okay. I couldn’t say what exactly was wrong but my gut was telling me to stay alert. Anyway the labour was difficult, it took what seemed like a lifetime for her to cry and she wasn’t as pink as my other girls had been when they were born. I was worried but was told over and over again she was fine and that I probably just had the blues. So we went home but my anxiety rose as she couldn’t take her bottles for a very long time at a go, was sleeping nine hours at a time and wasn’t gaining weight. I brought her to A&E three times before she was twelve days old but both they and our health nurse at home said that it was me -that I just over-anxious, had possibly got post-natal depression and even that I was molly-coddling her. But something inside me told me something wasn’t right and so I fought my corner on the last go and eventually got her admitted. The next morning we were told that she had a slight heart murmur but they still sent her home to await an echo for six weeks’ time. Straight after being discharged I brought her to my GP (who was back from his holidays) and he knew something was seriously wrong. So he picked up the phone and sent her straight to another hospital which was where we were told she had three holes in her little heart and that she would need to have heart surgery in Crumlin.

In a state of shock and panic, when we got the call up the next day,  I ignored my gut instinct and instead took advice not to upset my other two daughters by saying goodbye to them. And so we just left, just like that. The poor little things, trying to adjust first to a new baby and then mammy, daddy and baby just disappearing. When we got up there I felt so bad for them and I wanted to ring them all the time but I was afraid I was going to upset them. I missed them so much but couldn’t say it out loud because I knew I had to stay strong.

So in this tiny cubicle on St. Theresa’s ward we stayed; staying strong and hoping, praying and wishing without realising how long we would eventually be staying for.   I had to stay strong before her surgery, during her surgery and after her surgery. The two things that stick out clearly in my mind were getting Mackensie baptised in this little cubicle before her surgery and having to learn how to do baby CPR on her before we got home.

It didn’t take long to meet other parents in the parents room, and it was surreal how we all learned the lingo quickly and were able to talk like doctors and nurses: conversations would go anywhere from discussing surgeries, types of heart valves to tube feeding and medications. But on the inside we were all feeling different emotions at different times; we were so tired, we were scared, we were frustrated and even sometimes guilt ridden – was it our faults our babies were sick, how are the other kids at home, how will we manage financially, why did this happen to us, why amn’t I worrying like all the other parents are? Our worst days were if a baby had lost their battle. No-one wanted to look at each other in the eye, because the fears and pain were too raw. And we had of course, to stay strong.

The day before Mackensie’s surgery, a great friend of mine now, that I got to know because her little baby girl was there, decided with my husband not to tell me about a little baby that had died that day, as she knew it would terrify me.

And she was right, it would have.

We eventually got home after a long six weeks stay and I soon realised very quickly that my safe haven of Crumlin was gone. I remember panicking on the first night because I wasn’t sure if the nib in the syringe actually counted as a milliletre of Frusomide or not!  I worried about who would be able to mind Mackensie if I got sick.   I had lost trust in so many people because of the so many battles I had initially to get her diagnosed and because my husband and other family members believed the doctors too at that time and not me,  I had lost trust in anyone else to mind her or my other girls too. I was so scared being so far away from the security that if anything went wrong we didn’t have specialists to hand.

I soon learned a few months later though in one of the fastest journeys of my life those ambulances can get there fairly rapid if they need to!

But I also realised I didn’t have the security of the parents in Crumlin to talk to. I remember one day when we had to be moved to another ward temporarily it had made me so upset that the kind nurse moved me back. I was so lonely and missed everyone so much that I needed the security of St Theresa’s to keep me sane. Back home I knew that people were trying to be positive by saying that “she didn’t look sick at all” or that “sure she’d be grand”, but I used to feel like screaming at them  because I had so many fears for her future.

And then my lovely friend that had protected me from my pain, before Mackensie’s surgery, rang me to tell me about her pain.

Her beautiful baby girl had died.

Words cannot describe the hurt, pain and utter heartbreak. My friends had lost their only baby during heart surgery. It was just so, so sad. And frightening.

So you would have thought after that a few months later, when we were told Mackensie wouldn’t need her next open heart surgery that I would have been so relieved and happy.

But no.

The silent fears suddenly came to a head. I went home, I closed all the blinds in the house, turned off the phone and for three days solid, I cried.

I had no idea what was happening to me and I felt so, so guilty. Why was I crying? Did I want my baby to be sick? What was wrong with me? I couldn’t talk about it to anyone because I felt like such a bad mother and my anxiety started getting worse until soon I couldn’t tell the difference between my gut instinct and worries. I didn’t want anybody to mind the girls and I started staying in, even quitting my job in the midst of it all. It all came to a head one day when I couldn’t get my husband on the phone and I had convinced myself he had been in an accident. One of my closest friends, Linda, came in to the house to calm me down and it was that day that I knew, I needed help. Because of my anxiety issues around the girl’s safety and that I may not hear them at night I refused anti-depressants or sleepers, which probably would have been a great help, so instead, I sought out counselling.

The first day was the hardest; my counsellor was sitting talking to me and I suddenly heard an ambulance in the distance. I made a bolt and just jumped out of my seat and ran out the door. He ran after me not knowing what was wrong and I explained that I felt something was wrong at home – he reasoned there and then that I would be quicker on the phone if I rang, and I did. Of course my poor husband, Fintan, asked why was I not in counselling and I told him about my fears. So for the first six months of counselling, I sat with my phone turned on, the door left ajar and the promise that Fintan would ring me if anything was wrong.

So, for the next two years, every Monday night, I met my counsellor.

And it saved me. It saved my family.  It saved my marriage.

I will never be the person I was before Mackensie was diagnosed but to be honest I wouldn’t want to be.  I still do get the odd twinge of anxiety every now and then, but I now have the tools to cope with it and so much more now. And I know blaming hospitals or anything else for that matter does not help…it only builds up the anger inside. Being proactive and making wrongs right does help though and it is this reason why I am sharing my story with you.

Recognising you may not be okay is the first step. For me it was the anxiety, anger and guilt but for others it may be the complete opposite. Talking is the next step. Talk to a friend, family member, GP…you may be surprised that they already know that you are in a bad place. Next get help – figure out which is the best way for you to get treatment by talking to your GP or psychologists like Deirdre. Know that the reason you are feeling this way is because you are trying to stay strong in a really stressful situation and sometimes when the calm after the storm comes, the real storm is only starting for you. My counsellor always told me not to be too hard on myself and I’m here today to say the same to you guys – Go easy on yourselves, know it’s ok to feel the way you’re feeling and talk to one another.

Thanks so much,

Olive x

 

 

World Health Innovation Summit: The Platform for Patients and Professionals, with the Purpose to Partner.

With hundreds of health events being launched every single day across the world, I often hear people say, “Oh, conferences – they’re just a money making racket” or “Health professionals feel they have to go to them, to earn learning credits”, or “They’re just excuses to get out of work and go out on the town afterwards”. Often when I talk to patients like me, they tell me that the topics of discussion at health conferences and such, can often be too “disconnected from reality, from a users perspective” or that they don’t benefit personally from such events . Well, after listening to all these type of comments and opinions for the last few years, I’d like to try change some of the mindsets about health events, conferences and summits. 

From a patients perspective, and using the World Health Innovation Summit as an example…

A summit has been defined as bringing together people from “the highest attainable level of achievement”. A world summit brings these type of people from across the globe together in one place, and a world health summit brings together, on one platform, these people, who are working in the fields of healthcare. Innovation has been said to be crucial to the continuing success of any organisation and is defined as “the action or process of innovating” or “a new method, idea, product or process”. It showcases these innovations in healthcare, created and led by people whom have the highest attainable level of achievement in their fields, as proven by their peers, which will be showcased exclusively, together, at the World Health Innovation Summit.

In every way, the World Health Innovation Summit does exactly what it says it does.

As a patient myself; carer to my husband who had stroke at 42; and mum to three daughters whom each have had complex chronic conditions, I have seen everything in health services – from good examples of care, to not so good, to downright dangerous. I personally struggled with the self-management of our little families health needs until one day, by accident, and when caring for my dad who was on 22 medications, I developed a very simple toolkit to help me, as his carer, and him, as a patient, manage medications, health information, communication and appointments.

Little did I know, three years later, how much of a difference my little toolkit, the MediStori would make, to not just my family, but patients, families and health care professionals right across Ireland. 

So what has this got to do with conferences?

Well, I have always said from the beginning, that I only take credit for the concept of my project, but I never take credit for the finished product, or in the way in which it is delivered to patients. This, I can openly say, is down to the many, many people I have met along the way, who inputted into it’s design and development. I can also say that I would never have met most of these people if it weren’t for the conferences, events or workshops of which I attended.  While I was always made feel most welcome at these events, a lot of the time I often felt a little over my head or out of place, because I was the “patient”. I would regularly think that “I don’t fit in” with all the health care professionals and big pharma companies. Quite often I really wanted to comment on some of the stuff being said by the speakers, but didn’t feel confident enough to do so. Eventually, I found some other patients like me at these events and it wasn’t long before I realised that they often felt the same! So I started getting braver and in 2014, I took my first plunge – I stood up at a national conference which was being globally live-streamed; I took a mic and I put a comment to the fantastic innovator Ms. Helen Bevan. She was very engaging and I got a huge applause for my statements, so needless to say, I have never looked back. 

Patient Safety Conference 2014 157 helen bevan

Since this day, both I and many of the health care professionals in that room that day, connected.

I was told how hard it was for health professionals to find innovative and interested patients and carers who wanted to work together to improve services. I thought this was amazing as there were so many patients in the service, but realistically this made sense, as how could anyone ask a sick person to join a working group or a new initiative? It was really up to the patient or carer to put themselves forward. I told them how hard it was for me to attend conferences as they cost so much money and that a lot of the time, unless I was a company, charity or health care professional, I couldn’t attend. It seemed that we were all trying to find one another, to help create positive change, but had no signposts to guide us! 

And so when I spoke to the Founder of the World Health Innovation Summit, Gareth Presch, I knew that he was onto something very special when he discussed a global platform for all health innovators. On this, I not only decided to support the World Health Innovation Summit, but was delighted then to accept the offer of being part of it’s international team. This summit, for me, summed up how to practically address the “Three C’s”  – Collaboration, Communication and Community. It simply aimed to bring everyone involved in healthcare to one platform – to share and learn from one another, with a vision to work together to create the positive culture changes needed in health services across the globe.

As a patient, I felt I was now part of the solution, and not the problem.

So what makes this Summit so unique…for me, as a patient and social entrepreneur?

  1. #WHIS is a community interest company – meaning, after costs, all profits made are put straight back into the local community of which the summit is held. #WHIS is a true social enterprise!
  2. #WHIS is a community focused initiative – meaning there is not just one summit per year in one country – these summits can be held anywhere in the world, a number of times a year – by anyone involved in healthcare! The #WHIS team support communities to achieve this. 
  3. #WHIS is open and inclusive for both speakers and attendees. It brings people from EVERY area of healthcare together – patients and carers, health care professionals, managers, administrators, families, businesses, social entrepreneurs, innovators, experts by experience, non for profits…anyone who is interested in learning about what is happening in the healthcare arena across the world.
  4. #WHIS is for those who want to be part of it – the only “credits” given are that of thanks to all involved and those who attend. The positive outcomes from #WHIS will be the learning from one another. 
  5. #WHIS is led by an international, diverse and inspirational team of health innovators who want nothing else but to make our world a better place. Person by person, village by village, country by country. This network is already there, it’s just a matter of joining the dots and collaborating.

So have I changed any of your thinking about the benefits of going to inspirational events, like #WHIS?

If not, then why not go and see for yourself if what I say is true? 😉

The first of the World Health Innovation Summits global series kick-starts in the UK in the beautiful city of Carlisle, Cumbria, March 10th and 11th of this year. It will showcase inspirational people (including yours truly!) who have been working so, so hard to improve health services either personally, locally, nationally or internationally and who are willing to share their experiences so that a  global audience can watch, hear and learn from those who have already met the barriers, challenges and successes in creating positive change in healthcare. 

These people, and I, only want what’s best for patients, carers and everyone, in healthcare.

If you think you are a person who is a true collaborator and only wants the best for patients and health services personally, locally, nationally or internationally, then I invite you to join us on our journey, because in reality, we will all be users of our health services one day, and we will all have one aim – to either get better, or to help someone get better. 

Looking forward to meeting you all in Carlisle, 

Olive O’Connor

Click on this link to get tickets for the World Health Innovation Summit

Join the Conversation:

Twitter:     @HIC2016

Facebook:  www.facebook.com/worldhealthinnovationsummit

Youtube: https://www.youtube.com/watch?v=Rj-GXJKW34g

Website:     www.worldhealthinnovationsummit.com

Presenting and attending at the National Medicines Forum 2015

Last Thursday, on the 30th April 2015, the 3rd National Medicines Forum was held in No.6 Kildare Street, Dublin 2 – also known as the Royal College of Physicians of Ireland.  Upon walking in the doors of this truly remarkable building, you honestly feel like you’ve stepped back in time – you can feel the depth of history and can imagine the learning that was absorbed by medical practitioners gone by. Ironically this same sense actually ran as a theme for a lot of the day as many of the speakers reflected on past eras to compare to present activities.

As I walked into the great Corrigan Hall, I felt that usual flutter of nerves in my belly, as I started thinking about my own upcoming presentation. As a non-health care professional, I was very aware that I was in the presence of extremely skilled, educated and knowledgeable persons from the medical arena, but thankfully, as soon as the speakers began, I soon became absorbed in the topics being discussed and my fears quickly disappeared (until it was my turn that is!).

Now I realise that if I were to write in detail about each and every presentation that was delivered from this enlightening eight hour forum, I would have a short novel written, so instead, I will just do a quick skim over from my perspective as a patient, on what I felt was an extremely educational and inspirational experience, from beginning to end.

Thinking back to when Dr. Helen Flint, National Lead for Medicines Management [ONMSD], kindly invited me to this event, I remembered my initial reaction upon hearing its title, and I was a little apprehensive about whether I would be able to comprehend all the medical terminology during the day.

But to my surprise, when I heard the chairs, Dr Helen, plus all the other speakers present their findings, I not only understood [99%!] of what was being said, I also found myself relating to nearly all of the drug names, their classes and what they were used for! Upon realising this initially, I was delighted as it meant I wasn’t sitting there clueless – but a split second later, I recognised that in the reality of my life, this of course, was not a good thing at all because I had either taken or given many of these drugs to different family members over the last few years due to all of their different chronic illnesses.

It was after Ms Mary Brosnan’s (Hon President IADNAM) opening remarks and during Professor Michael Barry’s presentation that many of these medication names were mentioned. Amongst other findings, he was able to showcase some possible projected financial savings if a switch from branded medicines to generics were to happen. Now this topic came up again later during the day when GP, Dr Brendan O’Shea and his team, implemented a study which was able to test the reactions of patients when the branded was changed to a generic by their health care professional. While the majority of patients had either no change, and/or positive outcomes, there were patients who were not happy and even some frustrated or angry with the changes made to their drugs, even though they agreed to partake in the study.

As I listened to these outcomes, I couldn’t help but contemplate how I myself would feel if my children’s drugs were changed to save money, especially if the drugs had been working perfectly fine.

I’m sure I would have asked…

Should I change their medications just to save the “health service” money?

Can a price be put on life or well-being?

And so I thought back to earlier in the day when Deputy Head of the National Centre for Pharmacoeconomics (NCPE) Dr Roisín Adams demonstrated the tough job her team have when recommending what drugs should be put on the reimbursement scheme. Dr Roisín told us how they had to use as much evidence as they could find, from across the world, to weigh up the effectiveness of a drug in comparison to its cost. She explained the difficulty in getting good, quality, measurable data and asked us all to participate in making a decision as to whether we would buy in a drug that could add six months extra to a person’s life. We all found it very difficult to make a decision without more information and she demonstrated that one of the important things they needed to learn was what the quality of life for that person would be in that six month term. Obviously so many other factors came into this process, but she spoke in a way that even I could understand – considering I even found it difficult to pronounce the word “Pharmacoeconomics”!

The tough job Dr Roisín had when making these decisions was made even clearer when inspirational patient and advocate for Cystic Fibrosis Ireland, Katie Murphy, spoke about what her peers had to say about a drug that had worked wonders for them.  Katie showed us the many testimonials from CF patients who had been affected in the most positive of ways by this miracle drug, noting that this type of “quality” data is what needs to be captured and used, to help the likes of Dr Roisín and her department make more informed decisions.

Now in the last few years, I had heard this term “informed decisions” being bandied about but I had often wondered if everyone knew what it meant. So when Professor Laserina O’Connor, Prof. of Clinical Nursing (MMUH, UCD), came on stage, I immediately took a liking to her as she showcased some of the one-to-one work she had been doing with patients in the community setting. She was able to validate that by understanding the daily life experience of the patient she could then assess the situation realistically and determine best treatment methods for that individual. She also acknowledged the importance of educating the patient, and their family, about their chronic condition and recognised the difficulty they can have in managing medications and treatments on a daily basis.

But we found that another group of people were also affected on a daily basis by medications and treatments – and these were our prescribers. After a warm welcome from Dr Maura Pidgeon, Chief Executive Nursing and Midwifery Board of Ireland; Professor Peter Weedle, School of Pharmacy UCC,was able to showcase his innovative technology to help health care professionals manage medication reconciliation. He spoke about how to “SIN with EASE by KISSing” [an apt analogy you had to be there for!] and continued his presentation by showing us a very funny YouTube clip [watch it here, it really is very funny!] where a psychologist tells his patient who is afraid of being buried alive to just “STOP IT” over and over again.

Now, of course, everyone can take their own message from this video but for me I feel that there can often be a lot of frustration for health professionals when patients don’t change their behaviour, and as a result, they can either continue to just say the same thing to everyone or go into complete reverse and say nothing at all, putting all patients in the one bracket. I think the same goes for health care professionals who also don’t want to change their behaviours when prescribing and so the message in this video goes both ways. But one thing is important for all stakeholders in our health system – education is fundamental. Health care professionals have an extremely difficult job – every day they make decisions about people’s lives – which can be the difference between that person getting better…or the complete opposite.

So when Dr Mary-Jo McAvin, from the National Medicines Information Centre in St. James Hospital spoke about how their service aims to promote the safe, effective and efficient use of medicines for health professionals, I was delighted that they had somewhere to go to help them continually make better decisions. I learned on the day that through their clinical enquiry answering service they provide evidence-based information and advice to healthcare professionals/agencies on all aspects of the therapeutic use of medicines including indications, drug interactions, drug use in pregnancy and lactation. I have to say I really was so glad to know that professionals had such a great “go-to” service for medical evidence!

Evidence I’m sure some of which has had to have come from Dr. Tamasine Grimes, Associate Professor (Pharmacy) TCD & Tallaght Hospital whom presented a variation of possible ways in which to tackle medication issues.

When she told us that more than 8% of emergency department admissions were due to drug related issues I immediately thought to myself, that if for every 100 patients, 8 of them were not in A&E, this could help tackle the huge problem we have of people lying on trolleys for days on end! 

Dr. Tamasine demonstrated the importance of collaborative team efforts in hospitals regarding reconciliation and told us that 6% of all discharged in acutes had a potentially severe drug error. She revealed how a study, named PACT [Pharmaceutical Care in Tallaght Hospital] was a collaborative model of pharmaceutical care involving medication reconciliation and review. She told us it was delivered by clinical pharmacists and physicians, at admission and during inpatient care, and at discharge was shown to be protective against potentially severe medication errors in acute medical patients and also improved the quality of prescribing in older patients. She went on to describe their launch of their Zero Harm Initiative just last month, an initiative I’m proud to say, I also enjoyed helping out with.

After her presentation, I got a bit brave and took the microphone to openly commend Dr. Tamasine and the team in Tallaght on their collective approach and hoped that more in the room could take part in trying to disrupt any unhealthy competitive cultures and replace them with collaborative, nationwide initiatives.

On this, Professor Michael Barry closed the day remarking on the innovation and enthusiasm that was shown throughout. As he spoke however, I couldn’t help but think again about his presentation and about how I would feel if my children’s drugs being changed to save money.

And I thought – what if my children were started on generic drugs from the very beginning of their prescription?

Would I be asking these same questions?

Probably not.

So what if prescribers just started giving the newly diagnosed generic drugs  to begin with– thus avoiding the upsetting of those already on drugs which are working for them?

I thought of my children’s physiotherapist – if his hours were cut because the HSE had less money due to unnecessary overspending on medications, then my children’s health would be at risk.

And then yes, there would be a price to pay for their well-being.

So maybe if more patients were educated on the implications of the costs of branded drugs versus generics, then we could all  actually help our health care professional and health service, by requesting generics ourselves?

And so, happy that I could take so much away from the Forum, I looked around and again thought of the building we were in and how many others, just like myself, had gained insights from inspirational speakers, in this very room. I reflected on how I had felt when I saw the beautiful staircase as I walked in the doors and I recalled Dr Helen Flints presentation,  showing us how the role of the nurse had changed a lot in many ways, but not so much, in many more.

Change, of course, will always be a challenge but remember anything can be achieved if we don’t mind who takes the credit. We should strive to change what needs changing, but be smart enough to leave well enough alone.

Much like this big, beautiful building.