Doing it with us, not for us…

“Taking account of the perspectives of patients and their families is crucial to articulating the reality and identifying the gaps between patient safety measures possible and the levels of safety being experienced by patients.”

Building a Culture of Patient Safety, July 2008

Staff Guide to Patient and Public Participation, Cork University Hospital

In the last two and a half years, I have attended many health conferences – coming face to face with some of the most innovative people & solutions in health care and more often than not, finding myself wanting to tell every patient in the country about how much ”good stuff” actually goes on in our health services! On one occasion, I actually couldn’t hold back this same excitement and without thinking, I took the microphone and addressed a 500+ room full of health care professionals at the National Patient Conference to tell them how motivated I was about their work and how I wished the media shared these positive stories with patients across the country, instead of just the negative ones.

Obviously I don’t make a habit of doing this (as afterwards I was shaking with exhilaration) but I still get the same feelings when I am invited to sit in on new initiatives to give my view as a patient. A lot of the time sharing is not always in the projects best interest until later stages and so I have to sit tight…excited at the prospect of when patients would learn of them.

So you can imagine my delight when I was given the go ahead to share not just one, but two innovative patient safety initiatives happening in national hospitals across the regions. The first initiative was the launch at Tallaght Hospital of their Zero Harm Medication Initiative and which I felt very privileged to be able to talk at and then write about afterwards, which you can read here:

The second was when I got the news that I could also share what I learned from attending Cork University Hospital’s launch of the 2015 – 2018 “Doing it With Us, Not For Us” Strategy. Now I’m sure you think, sure the name of it says it all (and it does!) but I always think it’s good to put it into perspective as to how we, as patients, tend to actually practise this strategy already in our everyday lives, just in a different way.

Take myself for example. If you know me personally, you will know that my day to day opinions can vary vastly depending on the health professional or service myself or my children are using. Very often, I will share my experiences through phone calls to friends or family or through my selected charities “Private Patient Forums” to see if others in similar situations have experienced same. When I’ve had a particularly positive experience, I will endlessly promote the health care professional, the service or even the resource to anyone who I feel could benefit from it. But I’ve also recognised that when my reaction is the complete opposite – I tend to demote in the exact same manner – and all without even realising the impact my perspective of my personal experiences can have on others actions or reactions going forward.

So why are we having these conversations with everyone but our health care professional?

Why do we feel we can’t tell them how we’re feeling?

And how can change ever be implemented unless health care professionals know what the problems are? Upheavals

Some people have a preconception that “strategies” take a long time to roll out and that they need a whole cohort of people to make it work. But why should they? Any plan can be implemented straight away – it simply starts with one person just having a conversation with another. There is learning from every single conversation that is had between health professionals and patients. Just like when you pick up a phone and share how your day went with a family member, or when you update your status on a patient forum.

A patient’s opinion can shape others actions and decisions going forward.

The conversation needs to happen between all involved in a patients care and this is what the strategy aims to do – to have patients and health care professionals talk openly and honestly with one another about their care, their situations, and their fears. This strategy is being intended for the best interest of the patient, right now, not just the “future” of our health services. Identifying that this strategy aims to change the relationship and behaviours of both patient and professional, there will be a stage of evolution and revolution at times and the Staff Guidelines for Public and Patient Participation is an excellent resource for staff which provides practical means and toolkits to help them implement this strategy, in line with the work they already do, with the hope that engagement with patients can happen naturally, without force.

And so as I sat in the state of the art auditorium after reading through the guidelines, I though how excellent it was to have an auditorium for staff training in a public hospital. When I asked about how it got there I was informed it was designed in the mid 60’s and build in the 70’s and this got me thinking. Someone, some time ago, knew how importantly it was to always be thinking about the future. To be upskilling, training and re-educated if needed. And they valued this so much, that funds and time were put into its design. This proactive approach is exactly what is being done with the strategy and is being led by the same type of forward thinkers. Thankfully the Strategy has a strong leadership team and each of them represented their views and thoughts at the launch through –

Mr J.A. McNamara – CEO CUH Hospital Group

Ms. Celia Cronin – Clinical Governance Manager  CUH

Ms. Margaret Murphy, Patient Advocacy, External Lead Advisor WHO, PFPS

Mr Liam Woods – National Director Acute Hospitals – HSE

Mr Gerry O Dwyer – Group CEO South West Hospital Group

Ms June Boulger – National Lead for Patient and Public Participations Acute Hospital HSE

Each and every one of the speakers and health professionals in the room know the challenges they may be faced with along the way.

But if we don’t try we’ll never know.

We all have to work together, as patients and health professionals to make our lives the best they can be. Collaboration is key.

Because we all either want to get better, or to help someone get better.

Let’s all “Do it With Us, Not For Us”

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




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.