In the absence of an electronic medical record (of my own) where is my medical data?
Many doctors, dentists, physios, pharmacists and others
Thinking back over my life to date there have been many medical consults. Lots of diagnostics. How do I bring my doctor or physio up to date quickly on my medical history?
I would consider myself reasonably healthy. I’ve really only had 3 or 4 general practitioners over my life time. I have had consults with ortho, cardio, uro, neuro and general over the years. I have had multiple diagnostics – MRIs, Xrays, Ultrasound, barium meal, blood tests – perhaps others. Trips to ED as a result of skiing, car accident, rugby, cycling. Lots of physio (multiple practices) – back, hamstring, ankle, tennis elbow – massage, dry needling, acupuncture. Perhaps three dentists – fillings, extractions, cleaning. Multiple pharmacists for various prescriptions including anti-inflammatories, antibiotics, pain relief. Minor operations under general anesthetic. COVID vaccinations. Various vaccinations prior to visiting various international locations. And that leaves out being born, jaundice as a kid.
Sharing the data – my medical record
It just doesn’t really happen the way you would like. There are probably four physio practices with separate records with respect to my back condition. And at least two orthos and one neuro in different hospitals – with various data. And my current GP would have some of this data. To say nothing of what exists in the various hospitals or diagnostic clinics I may have visited re my back.
In other instances consultants have requested blood test results – which had previously been ordered by a GP. They may have been emailed to me and from me to the consultant or from the GP to the consultant. And, presumably, the various consultants also have notes with respect to my various ailments. And, if the system works, some or all of these notes may have made it to my GP (via post
Then there is the data I record myself e.g. daily blood pressure records or weight or sleep patterns. Or records I may maintain in apps such as ‘patientslikeme’.
What would good look like?
In the first instance I would have an electronic medical record – owned by me. And I would use this record in interacting with any medical provider.
Not going to happen retrospectively for me. But what about people being born now and going forward? What would be the benefits? What would be the challenges, obstructions, risks, down side? Who would pay for it?
The right data should enable more efficient medical care, more personalised medicine, improved diagnosis and treatment. But this would require consistent data capture, ease of access, security over access. And, of course, willingness (or legal requirement) of providers to provide data in acceptable electronic format.
In this scenario a 45 year old would have a very detailed personal medical record – detailing all interactions with medical providers over her lifetime. And this should serve to enable the 45 year to interact more effectively with future advisors. There should also be a method whereby the 45 year old can share anonymised data as she sees fits with various research entities.
Where next?
I think we have to accept that all of the providers will continue to have their own systems and processes – designed to enable them to run their provision of services optimally for them. In general, with some notable exceptions, there is an acceptance by providers that they require electronic records – that paper charts no longer ‘cut it’.
I have commented previously on the need for EHRs in hospitals (but the conflict as to who really owns the data). Individuals will require their own medical record. This will require specialist companies who will assemble these and maintain them on behalf of individuals. I think the likely scenario is a paid service that an individual subscribes to – whereby the provider will set up and manage the individual’s personal record. These entities will probably liaise directly on behalf of their customers with the providers of health services. On behalf of patients they will provide access to relevant data and receive back additional data from the providers.
Possible disruption
Were this model to succeed this may lead to significant disruption in the market place – with patients having much more influence in the market place through these companies. A comprehensive electronic medical record will change the game. But better data should ensure more efficient service delivery. And such systems should support improved research.
M2m Day 5 – Excitement, relief, achievement, never again, can’t wait for the next one, once on a life time, fatigue, pride – and lots more thoughts for everyone
Letterkenny to Malin Head
Nice to be only cycling 80km in a day. But what a finishing route – legs may be hurting, but brilliant sunshine as we headed out across beautiful Donegal. And the route has a couple of testing hills 0 to check that each of us still have something in the tank.
The stop at Malin village was very special – a chance to relax, reflect – before the hype/ excitement of Malin Head itself. Lots of photos, ice-creams, chat. And then the 14km winding route out to Malin Head itself.
Malin Head – no way to avoid a sharp, nasty 150m climb – everyone made it. Wonderful to be clapped and supported all the way to the top. Lots of friends and relatives there to support. But that feeling – that you have done this – a group of 90 people – 10 working for 5 days to make sure the other 80 can sit on their bikes and cycle and get it done.
The celebrations
Down to the Seaview Tavern. Surrender the bikes to our support crew – still working. Chance to relax, catch up with supporters, rest the bodies. And an outstanding Munster Final as a bonus. And then back to Buncrana for the end of M2M2022 dinner – with some outstanding speeches/ recitations from Brendan, Liam and Jim. Great evening.
So what next?
We have seen what can be done with lots of preparation and support – moving 80 cyclists from one end of the country to the other in 5 days – safely. We have experienced what it is to be part of something like this.
I feel very privileged to have been a participant. This was my third M2M – and they have all been fantastically rewarding experiences – testing myself, building new friendships, raising money for Breast Cancer Ireland and development of our club, seeing how other people tackle challenges. Mostly, though, just being part of something very worthwhile.
Kilmacud Crokes a stronger club than ever – with all these new bonds and friendships. We will finalise all the amounts collected and handover funds to Breast Cancer Ireland and the Club in the next few weeks.
We are all a lot fitter – and much better cyclists. So – we need to get out there and enjoy cycling and every other exercise. As we were reminded last night – M2M is an event within KC Wheelers – we want people cycling regularly and enjoying it. Up the Crokes.
Finally – a few memories of 2016, 2018 and 2022 (all seems like one to me)
M2M – Day4: Longest day – kilometrage, hours in the saddle, strong wind, burning sun – great day!
Why do we (or why do I?) do this?
Left Kiltimagh at 8.00am and pulled into Letterkenny at 8.30pm (and faster groups may have done this in a couple of hours less). Even allowing for breaks quite a lot of close and personal time for my rear end and the saddle! So what do this? Probably all have our won reasons:
because it’s there
because someone asked or challenged me
to raise money for great cause
because that’s what I do every two year (except during covid)
because I want to do it both ways (or more)
for the craic, friendship, comradery, sense of team…
…and lot’s more
For me – first time because I was asked/ challenged, 2nd time – to do it the ‘other way’, this time – well -just made sense (if that’s possible!).
Sunny and windy
Some highlights
Without doubt – getting there. And the last climbs out of Ballyboffey and before dropping down into Letterkenny were definitely sent to test us. But all the cyclists came through.
Late lunch in Bundoran – much needed – and thans for making mor sandwiches when we were well behind the clock.
The 99 in Ballyboffey – later in the evening.
The views of Benbulben and Mullaghmore.
But most of all – congratulating (and being congratulated) by all your fellow cyclists after completing the 188km windtunnel event.
On a personal level found it much easier to negotiate the Barnsmore gap in the company of other cyclists than late at night with the sunlight failing (back in 2016).
The continued high standard of support from the great crew – important for supplies, repairs, moral support, keeping us safe on the road.
And remembering previous trips in 2018 and 2016.
Looking forward to Day 5
Can’t wait to get back on the bikes at 9am and make our way out to Malin and Malin Head. Bring it on.
This time we stayed in Lehinch and headed for Kiltimagh. 6 years ago we went from Ennistimon to Ballina. Much bigger group now, weather just as good – this was a shorter spin (but tomorrow we will make up for it as we have 180km to our next stop in Letterkenny).
What I did notice this time was the ease with which all the cyclists climbed out of Ennistimon. All the training has paid off – and the consistent encouragement of Donie and Linda!
Lehinch onto Kinvara.
Beautiful weather. Down Corkscrew Hill into Ballyvaughan. And from there pressed on to Kinvara for an idylic stop and a well earned coffee.
M2M also about the hard yards
Yes – the company is great, the craic is mighty, some of the scenery is fantastic. But getting from one end of the country to the other also requires effort and focus on safety. The 2nd half of the morning – cycling from Kinvara up to ClareGalway had all of us working hard – hard months of practice paid off as ‘up and over’ was called again and again. Great gathering of all the cyclists in Claregalway – sharing stories from the road and encouraging each other And our support crew always there to help.
And the planning never stops – cyclists across different hotels (right bags in the right hotel), on the road stops, departure times, coordinating early breakfasts, meeting up with people as we travel through the country.
And then back in the saddle – tough afternoon on busy roads up to Knock and left for Kiltimagh. And I think plenty of us feeling the effort after 400km in the first three days.
Dinner in the Cill Aodain Court Hotel – Kiltimagh
Once again we all sat down to dinner. And Liam O’Carroll treated us to ‘The West’s Awake’. Congratulations to the manager and the staff on an excellent meal. This is one cyclist who polished everything off.
Mizen to Malin Day 2 – took us from Killarney, CO. Kerry to Lehinch, Co. Clare.
Catch the ferry
Nothing changes – ‘lads we need to be out of here by 8 sharp – in order to catch the ferry at Tarbert. If you miss it you’re on your own’. Well we all made it comfortably – in fact we caught the noon ferry instead of the 12:30 ferry.
and quickly off the ferry and on to Kilrush for lunch…
Safety
When you look to move c. 80 cyclists from one end of the country to the other – safety is the number one priority. Everytime we came to a potentially tricking road crossing or travelled through a busy village – we had outriders in place making it safe for all. We talk about safety everyday – and pushed to have all complete safety training ahead of the cycle. It’s just core to what we do.
Hosted by the Burke family in Quilty
When I did my first M2M in 2016 this was a highlight; in 2018 we were travelling in the opposite direction and pressing to catch a ferry – did not get to stop. Today was great – and probably could have done without the second slice of Rhubarb tart. Wonderful hospitality in informal surroundings out in the garden looking out over the Atlantic. Thank you from all the cyclists.
Lehinch
Have had many a good day and night here – in particular golfing at the famous links. Many of the cyclists availed of the opportunity for a refreshing dip in the ocean. Missed this this time. Staying in two hotels – our support team worked patiently to get bags delivered across the two hotels. Excellent dinner had by all – and, once again, most headed for the bed by 10pm.
Met at 4.30am at Kilmacud Crokes and headed off by bus for Mizen Head. No masks – all the old slagging in full flow, even before sun up. Just great to be heading off with nearly 100 people to do something worthwhile together. Stopped for breakfast at Skibereen and arrived at Mizen Head c. 11.00am.
Day 1 cycle
Blessed with fantastic weather as we sped through Cork and Kerry (slightly slower climbing to Caha Pass and Moll’s Gap!). Scenery in West Cork and Kerry never fails to amaze – and in sunshine like Wednesday hard to beat it anywhere. Four groups on the road – and we met up at various stops on the route.
Tired bodies arrived in Killarney at 7.00pm. Dinner at 8, preceded by Liam O’Carroll’s Rose of Tralee and ‘de Banks’ – and almost everyone gone to bed by 10.00pm. After a 4.30am start, 5 hour bus journey, 120km cycle – and the promise of a 7.15am breakfast and 8.00am departure the next day – not that surprising.
Highlights of Day 1
The weather, the craic with your mates, getting our team on the road and cycling hard and safely. always love cycling through Cork and Kerry – top of the Caha Pass and Moll’s Gap on a day like this is very special.
And loved the chat on the bikes – when not climbing. and I have blown past my initial fundraising target of €2,000 – headed for €3,000.
and thank yous
To all the support team – keeping us safe on the road, moving our luggage, providing water, fruit, food at all our roadside stops. And in my own case – thank you the our physios in the group – lots of support, help dealing with the limits of my ageing, ‘slightly’ inflexible body.
My 5 day cycling challenge: Mizen to Malin 2022 – is nearly here. And I can’t wait: Wed 1st June to Sunday 5th June. Postponed twice because of the Covid19 epidemic. But we are good to go this day two weeks. Thinking back to my last M2M (in the other direction), finished 4 years ago at Mizen Head.
With whom am I doing this?
Up to 85 of us – all member of Kilmacud Crokes are doing the 5 day cycle. This is the biggest number we have had to date. We will be divided into 5 groups on the road – and looking forward to being in the middle group, I think. We have all trained together throughout the winter and spring.
Sunday spin
The funds raised
We are raising funds jointly for Breast Cancer Ireland and our club development fund. I am very excited to be raising money for Breast Cancer Ireland again – unfortunately I know too many friends who have been impacted by this awful disease. So important to raise awareness, raise money and fund ongoing research.
Sponsors
We have so many generous sponsors – over 40 have placed advertisements on the jersey we will wear. And our lead sponsor again for the whole event is Nissan Ireland.
The route
Day 1: we will set out by bus on wednesday morning at 4.00am from Stillorgan, heading for our start point: Mizen Head. Day 1 we will cycle from Mizen Head to Killarney – over the Caha Pass and Moll’s Gap. Great test on Day 1.
The Bus in 2016 – one bus used to be enough!
Day 2 (Thursday): cycle 130km from Killarney to Lahinch. Catch the ferry along the way. Already looking forward to getting into the sea to cool off having completed 2 days.
Catching the ferry 2016
Day 3 (Friday): cycle gets longer: 150km from Lahinch to Kiltimagh.
Day 4 (Saturday): Longest day’s cycling: 180km from Kiltimagh to Letterkenny. Am sure we will have an extra early start. By then my bike and I will have become very well reacquainted.
Day 5 (Sunday): Shortest spin of the week: 80km: but finish with that particularly nasty little incline up to Malin Head.
Made it in 2016 – now just need to repeat!
Your chance to sponsor my cycle
I would really appreciate your sponsoring my cycle. This will be my third time doing M2M – and I have always been very generously supported . Great cause: please go to my fundraising page and donate whatever you can. Many thanks in advance.
Great memories of 2016 and 2018
Great Mizen to Malin in 2016Our subgroup just before leaving Malin Head in 2018
Great podcast recently on healthcare rap focused on consumer strategy in healthcare.
Thinking about a consumer strategy in healthcare
Was particularly interested in contributions of Craig Kartchner of HonorHealth and his thoughts in his role as AVP Marketing and customer experience.
Patients love their doctors and doctors – from their perspective – have been patient (read ‘patient’ for ‘customer’/ ‘consumer’) focused from the word go. Craig thinks of the patient as a customer (or potential customer) before and after the patient experience – and he wants them to be a repeat customer. The doctor may see a monogamous relationship – the customer will have multiple relationships.
Improving customer experience
Some ideas:
Research where we are failing – in the before and after experience (We need to accommodate their needs and wants for entire journey – not just sitting in front of physicians)
Streamline access to care – when, where, how, speed
Improve care navigation – multiple systems, multiple visits, multiple tests, different sets of instructions
Simplify patient communication – ability for patient to communicate with clinical, financial, administrative – too complex, too slow, too unpredictable
Don’t let the tech get in the way of humanity/ empathy – patients want to be there for their kids/ their grandkids – may need a shoulder to cry on
Where can tech help?
Lots of ideas – leverage what you have:
Online scheduling
online wait lists – automatically offer appointments as they become available
eCheckin – avoid queues/ delays
telemedicine/ telehealth – avoid the trip
asynchronous care – complete electronic form and provide initial diagnosis
Challenge/ opportunity
Consumers (patients) are not interested in our complexity – they want it to be easier and cost less. Do we really understand what drives consumer thinking and decision making – to select a particular service or no service at all?
If we are to move to a focus on keeping people well we will need to build out better relationships. Intelligent outreach to patients, better care plans, people are more likely to follow treatment plans and in turn this will keep people out of hospital.
MXR per Rafael Grossman – ‘augmented reality where you have an interactive connection with the digital content over the real world for a medical application of some type’ – can be applied in surgery, training and other areas in medicine.
Now seeing Virtual Reality as another medical tool – not just diagnostics; opportunities to immerse yourself in the data more therapeutic uses for VR – impacting surgical procedures. Other applications in mental wellbeing, mental disorders, PTST, Depression, Anxiety
People now understand difference in VR and AR – and the use cases for both. Lots of use cases now in surgery. Training and education are ‘no-brainers’ – but more complex surgical applications likely to deliver real results.
Great mission: ‘liberate the world from fear and pain’. Focused on VR. Demonstrated power of VR for Exposure (PTST, Anxiety), Movement, Focus with absence of distraction (e.g. mindfulness practice). Global market developing for non pharma therapies.
Thoughts on XR – listening to this podcast
What really caught my attention was: ‘How do we take things that are well understood and demonstrated to be effective in a live analog setting between therapist and patient or maybe have been digitised in a 2D manner. How do we translate to something where we are working in an immersive medium where we can get all the digital benefits of standardisation, repeatability, personalisation, lots of data collection, closed loop of your reaction driving the experience itself while we’re doing an immersive medium where movement in involved and the brain is engaged differently, literally’.
Yes – there are challenges: need mor clinical studies/ research, comparative assessment capabilities across the industry, additional education/ talent e.g. thinking about how to maximise use of 3D. Lots of smart people with no real understanding of why XR is transformative – thought this is probably true for lots of people who have not experienced the online games world.
New technologies are enabling advances in XR – AI and Edge computing. AR brings lots more data – how to integrate with other data and what does this mean?
MXR (VR/AR) is just a new way for medicine to interact with the digital world.
Like this comment ‘2D pane of glass is not the end game’. And if you watch this video on YouTube, to paraphrase the patient: ‘if my world is 3D why should medicine stop at 2D’?.
Recently listened to a ‘Faces of Digital Health‘ podcast from 11th August with Lea Davis (former Medication Safety Pharmacist at Perth Children’s Hospital – addressing medication safety. Interesting perspective on role of electronic health record and technology in medication safety. It is not difficult to see how electronic records and systems can assist healthcare staff in improving patient safety.
How do overdose errors happen?
Interesting observations by Lea Davis: All nurses, doctors, pharmacists busy – checking lots of charts, sometimes lack of knowledge, sometimes checking books, sometimes decimal point goes in the wrong place, sometime doses are transcribed from one sheet to another, if not checking back to references may not pick up the errors.
What is the role of technology in improving medication safety
Keys to success included a clear vision and strategy of the systems hospitals wanted to bring in, the problems they were tackling and the type of data they wanted to capture. Best practices related to vision, funding, implementation and not just technology, automation, robotics. Solutions include scheduling, management of systems, closed loop medication management (scan barcode on a package to verify that the does matched what was prescribed).
Integrity of information on medication management is related to the biggest clinical system (EHR/ EMR – including community medicine records) – with this you will have less errors. When you look at hospitals who do not have the budget for this – then major efforts required to integrate the patchwork of systems (a lot of work and time, interoperability challenges). More recently developments in HL7, FHIR, open systems are simplifying some of this integration/ interoperability. Benefit should be less burden on doctors and executives in safe patient care.
Future of patient safety and technology
Patients to have tools to better manage their own care. Reduce fear for patients. Able to be treated more often in their home environments. Patients to have more of a say in how the information looks as they transition through their care journey.
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Without doubt – getting there. And the last climbs out of Ballyboffey and before dropping down into Letterkenny were definitely sent to test us. But all the cyclists came through.
Beautiful weather. Down 
And then back in the saddle 
– tough afternoon on busy roads up to Knock and left for Kiltimagh. And I think plenty of us feeling the effort after 400km in the first three days.
And Liam O’Carroll treated us to ‘The West’s Awake’. 
Congratulations to the manager and the staff on an excellent meal. This is one cyclist who polished everything off.
Missed this this time. Staying in two hotels – our support team worked patiently to get bags delivered across the two hotels. Excellent dinner had by all – and, once again, most headed for the bed by 10pm.
and arrived at Mizen Head c. 11.00am.
