Research

Launching MediStori Research at the Royal College of Physicians Ireland, 2016

Pictured here with speakers on the launch of MediStori Research in the RCPI - Mr. Stephen McMahon, CEO Irish Patients Association; Dr Rupert Fawdry, CEO WISDAM project; Mr. Richard Corbridge, CIO HSE/CEO eHealth Ireland and Ms. Deirdre Munro; Midwife, Researcher and Founder Global Village Networks

Please click on each tab below for more information on various sections.

The Validation of the MediStori Project

Click on the link below to a PDF version of the national research project of the MediStori toolkit as overseen by NUIG; funded by the HSE and led by patient innovator, Olive O’Connor, via two national public hospitals and various charitable and voluntary organisations.

The Hypothesis Prior to Research Project

Title: The Patients Perspective on the Need for a Universal Personal Health Record System

The Need for a Universal Solution to Combat Collaborative Issues Facing Health Systems [Includes Case Study for Personal Health Records to be recommended at Discharge & Outpatient Settings]

Introduction: Collaborative Issues Facing Health Systems

Readmissions: Men are more likely than women to be readmitted to the hospital within a month after being discharged…at an estimated yearly cost of $17.4 billion… “One approach included providing clear instructions to patients about what they need to do once they leave the hospital and following up with patients after discharge.” Agency for Healthcare Research & Quality states:[i]

Link in Chain: “Seniors continue to be readmitted to the hospital too frequently…The patients blame doctors and nurses. Doctors and nurses blame patients. And everybody blames the hospitals. The problem, everyone seems to agree, is that hospital discharges are a mess. Patients don’t understand what they need to do after they go home: They don’t see their primary care doctor, they don’t take their medications properly, and they land back in the hospital. That revolving door jeopardizes their health and costs…billions of dollars.” “Walking that fine line won’t be easy. That’s why it is more important than ever that doctors and nurses learn to talk to patients and that hospitals vastly improve discharge programs that, too often, are the broken link in the health care chain.”Forbes [ii]

Medication Non-Adherence: “Among patients with chronic illnesses, approx. 50% do not take medications as prescribed… today’s ever more complicated medical regimens make it even less likely that physicians will be able to compel compliance…”World Health Organisation[iii]

Individualised Needs: “The goals of chronic care are not to cure but to enhance functional status, minimize distressing symptoms, prolong life through secondary prevention and enhance quality of life… it is clear that these goals are unlikely to be accomplished by means of the traditional approach to healthcare that focuses on individual diseases and is based on a relationship between an individual patient and a doctor…The ability of patients to develop individualized treatment plans is, therefore, of critical importance for effective care. European Observatory on Health Systems & Policies[iv]

Digital Divisions: “The growth of the consumer society, coupled with the explosion in information available on the Internet, is creating more empowered patients, a phenomenon acting to increase the responsiveness with which health services are delivered. However, this may also compromise equitable access to care, as the digital divide enables those who are most privileged to take greatest advantage…while those in most need are left behind…” European Observatory on Health Systems & Policies

Costs on Systems: “…researchers estimated that of all medication-related hospital admissions in the United States, 33 to 69 per cent were due to poor medication adherence, with a resultant cost of approximately $100 billion a year. More recently [it was] estimated that $290 billion in avoidable medical spending across all chronic diseases could be attributed to drug-related problems, of which non-adherence to medications was a subset”. NEHI 2009[vi]

Section 1: Objectives

As we see from just some of the above statements, there are many, many different problems facing our health systems, and worse, the human race as we know it. But are these issues so disconnected or is there any one thing connecting them all? There are so many research documents showing evidence of why people end up being re-admitted, or why there are such high incidents of medication non adherence. There are even more showing the prevalence of chronic illnesses and more on how “technologies” could fix all of these above problems. Few documents look at all of these issues together. And there are even fewer solutions. But there is, you see, one common dominant denominator, between all of these issues.

And that is the patient. You see the patient, is the only link between all of their health care professionals. They know more about themselves than anyone else, unless of course, they are being cared for. The patient is the one with the illness, or as in a lot of cases, the multiple illnesses. The patient is our health system. And without the patient, there would be no health care professionals. And vice versa. The only way we will reform our health system is by focusing on and asking the most important people in our health system, what are the problems, and how do they think they could be fixed. We all need to work together, for the same solution – to either get better, or to help get someone better. It has been proven time and time again that a well informed, educated and reassured patient has a far less chance of having recurring visits to their GP or be readmitted to hospitals unnecessarily. But sometimes, no matter how proactive the patient is, there can be the need for toolkits to aid with the problems in hand. Toolkits to help a patient remember important information, such as whether they took their medications; or when was their last antibiotic or even to store information about their diagnosis. But the truth is, there are so many solutions out there, that it can be confusing for patients and health professionals to know what to use, and to know what to recommend.

This paper sets out to prove the benefits and business cases for patients, carers, professionals & health systems by either using or recommending a universal, uniquely designed personal health record system. One that is recommended & known by all health care professionals and is used & made habit forming by all patients and carers. The idea for this Personal Health Record system came from a patient & a carer themselves, and has since been developed with a greater team of patients, carers & health care professionals. It looks at all aspects of a patients & professionals needs. To date it is endorsed by the Irish Patients Association, the Irish Pharmacy Union & the Irish Carers Association. It has been shown at the Clinton Global Initiative at their national AGM in New York and An Taoiseach, Enda Kenny said it can save thousands in our health system. This unique system, called the MediStori, focuses on the patient’s unique medical story.

“Keeping a personal health record [PHR] has been demonstrated time and time again how it can improve service quality through the provision of accurate, timely information and user empowerment. However, if there is a lack of a national mandated, coordinated approach & resource constraints then this impedes personal records from being implemented in our health system.” HSE Report on PHR 2010 – 2012 [vii] 

Section 2: Current Systems

The Patient & Carer’s Perspective

One unique medical story is that of the Creative Founder of the MediStori, Olive O’Connor. She is a patient herself with multiple chronic illnesses. But she is also a mom and carer to her three daughters, each of who have had multiple chronic illnesses. Her youngest had heart surgery at just five weeks old; her middle daughter has juvenile arthritis & her eldest daughter is going through a complex diagnosis process.

The Problem

Olive had struggled for years trying to manage appointments, medications and symptoms. While most of her experiences in the public & private health system have been very positive, she has at times, felt, or been made feel like, the typical “neurotic mother”. Many of these times it was because, to put it simply, she feared for her children’s welfare. She has felt overwhelmed, discouraged, scared, frustrated & upset; caused by a combination of delays in information moving from one area to another; the lack of information or resources provided & sometimes the mannerisms of health care professionals. But thankfully, as she is organised & proactive by nature, she was able to self manage relatively well & relay information back to health carers accurately & quickly when required, of which everyone benefited from. But it wasn’t until her dad came home from hospital on 22 medications, did she realise she wasn’t the only one struggling. Before he was discharged, Olive asked were there any solutions to help him cope, but the only thing recommended to them in the hospital was pillboxes from the pharmacy. Now even though this was a great solution, she soon realised that only a quarter of his medications were in pill format – he was on injections, patches, gels, liquids, inhalers & oxygen. How were they going to remember when or if he had taken them?

The Solution

It got Olive thinking – how come people were not being educated on the importance of self management? Presuming that people go online for resources was inaccurate because according to the latest CSO, 1 in 5 over the age of 40 in Ireland did not use the Internet! And like many his age, her dad did not either. As a carer, Olive was very scared that she was going to give him too much or too little medications or that she’d forget altogether. And even though she herself loved technology (and can’t be seen anywhere without her phone!) she used what she had for her children (as no child’s medications are in pill format either) and she took out her notebook to log the times, the doses & what the medications were for. And it worked.

The Validation

She knew this because a month later, her dad collapsed at his own home & when the paramedics arrived they asked about what he had taken that day. Her mom took out this “notebook” & when they saw it, they said that it was one of most helpful things they’d ever been handed. It had in it, chart numbers, diagnosis & a full list of not just all of his medications, but the last times he had taken them. The paramedics knew then what medication treatments not to give & upon arrival to the hospital, his chart & relevant teams were ready. They had his full prescription to hand & so A&E staff did not have to ring his pharmacy or GP. They also knew what tests he had done previously, not just with them but at other hospitals he attended, meaning there was no need for re-tests to be done. There were so many benefits – time was saved for staff and Olive’s dad was treated quickly & accurately. Olive asked them, what about Apps or technology and they said they had many difficulties getting access to information due to passwords or phones not charged and they didn’t know which apps the patient was carrying. And so, based on that feedback, from the professionals, the MediStori was born.

Section 3: Objectives

The objective of the MediStori is to keep an entire patient’s past, present & future medical information together in one unit. This is to create a vital (but presently absent) medical data portal containing all of a patient’s most accurate & up to date information, which can be accessed at any one time, by any of the health care providers associated with that patient. Something as simple as going to after-hours GP is a prime example of why this major flaw in the healthcare system needs to be addressed: many patients are misdiagnosed, diagnosed too late or not diagnosed at all because fundamental information wasn’t to hand at the time. The MediStori aims to provide the patient themselves, the tools to provide these key points of data to ensure not only a speedy diagnosis but an accurate one too.

Patient empowerment is the key to changing our system as we know it, and it also helps relieve the strain on staff & carers within public and private health sectors. So, this versatile, personal medical “Filofax” style organiser is not just for single person use but builds into a complete medical record of each child, adult & grandparent in that family. From a design aspect, it will be a two-fold folder which can be can also be stood up like a flip chart to ensure regularity in use, therefore making the A5 refill pads, called Memos, habit forming. These Memos are designed to suit a range of daily medical issues (e.g. medicine intake, asthma, diabetes, arthritis etc.) & will be targeted accordingly to the 1.3 million Irish people suffering from these ailments at present. They aim to reduce the proven risks, anxieties & confusions for a patient/carer that can be associated with mismanagement of medications, appointments, diets or symptoms.

Features

The MediStori is a simple to use, paper based personal health organiser. It was developed by patients, carers & health professionals & is endorsed by The Carers Association, the Irish Patients Association & the Irish Pharmacy Union, along with many local & national charities.

Attributes

It keeps an entire families health records in one unit, allowing the patient or carer keep track of past medical history & ongoing appointments, medications, treatments & symptoms.

Benefits

PHR’s (Personal Health Records) have been shown to help decrease miscommunication, misdiagnosis, readmissions, retesting & medication non adherence. They have also been shown to increase patient quality & safety, which doesn’t just benefit the patient; but the entire health system as a whole. The MediStori is an all-in-one health organiser which aims to help a person’s individual needs as opposed to their individual disease. See demonstration video here: https://www.youtube.com/watch?v=FDXfO5v3YdA

Personal Health Record – Part 2, Daily Management

With the Medicine Memo, the patient does not have to re-write the medications over & over again, as the completed “log time taken” section can be changed & stored away for future reference. As in the case [see case study at end of document] when Olive’s dad collapsed, the paramedics were able to see the exact times & types of that patient’s last medications & also have a good idea with what he was diagnosed with just by seeing his list of medications. This is not only good for the end-user but also for our health system. If a person visits more than one clinic within the hospital usually they are asked about medications related to that particular illness in that clinic. It is so important that all medications are reviewed at each clinic appointment to ensure patients are taking them, and more importantly taking them correctly.

The pharmacist is one of many key health care professionals that help patients with their medications. The MediStori & Memos could help offer the community pharmacist another solution to their patients alongside their current valuable service of “blistering” [putting pills into organised containers called pillboxes on a weekly/monthly service]. Blistering has been a proven method to combat medication non-adherence but unfortunately can not help with medications in liquid, inhaler, injection or patch format. And this is where the MediStori can be used stand alone or alongside blistering. There are many more reasons as to why people don’t take their medications correctly or at all including:

  • Forgetting to take/give them in first instance
  • Forgetting when or if they took/gave them
  • Patient feels better & doesn’t feel need for them
  • Patient doesn’t know why they are taking medications
  • Patient doesn’t know how to take medications properly
  • Patient doesn’t like side-effects of medication

Using the refill Memo’s means a person can know about side effects and why they are taking their medications and means they can monitor all medications – not just their pills. It is of key importance that the MediStori is recommended & recognised by all clinicians & health care providers nationally so as everybody knows to use it and what to recommend. It is about being proactive & not reactive. The benefits of the MediStori & Memos combined are multiple & are designed keeping the patient in mind.

Section 4: Business Case for PHR’s

Engagement:

For the patient it can bring down many barriers when going to meet a consultant or GP – on our recent survey 41% of respondents said they never wrote questions for their health practitioner, with 30% saying they wouldn’t feel comfortable taking out questions in front of them. Having questions to hand saves time & confusion for the end-user, as does it for the health practitioner also. The MediStori, if promoted by health practitioners from all levels, could potentially bring down this barrier. The HSE’s own document “It’s Safer to Ask” could be put in the MediStori to help the patient feel they can ask questions.

Retesting & Re-admissions:

Having information to hand about your health can save on retesting and even re-admissions– many people with chronic illnesses go between many different hospitals & many of these hospitals are not linked up & so do not have access to the patients chart. If a patient is more knowledgeable about when they last had bloods done, had an x-ray done, or even know their results themselves, this can save on timely & costly retesting to be done.

Quality & Risk:

PHR’s in the form of vaccination cards for example are handed out at birth to new parents. Knowing information such as when/what vaccinations your child had is often asked at A&E. If the parent does not know this information it can delay/make it more difficult for diagnosis. But other information is also often asked in these situations such as history about specific illnesses such as chicken pox or family history such as heart disease etc.. The MediStori is about being proactive, not reactive & having ALL of this information to hand, in particular in emergency situations can greatly reduce misdiagnosis, reduce stress & risks for all stakeholders & can increase patient safety and quality. Many of the times A&E are used are at weekends or in the evenings and this then means the correct information can’t be received until the GP is in work. It is beneficial for the patient to have as much information to hand to help with a quick, and more importantly, accurate diagnosis.

Medication Management:

On the note of hospitals ringing GP’s, they also have to ring pharmacies. And this is because many people that end up in A&E either do not know what they are taking or are not able to communicate what they are taking at that time. The Medicine Memo aspect of the MediStori allows a patient or carer to note all medications that person is taking; the time they took them & the purpose of the drug. There are also handy wallets in the folder where printed versions from the pharmacy can be put also. This again, is beneficial to all end-users – the patient can get their medications written up quickly by the hospital pharmacists and it allows physicians have a quicker and more accurate insight into what that patient takes. Sometimes patients have to wait until the next day to get medications written up because the hospital can not contact the pharmacy.

Appointments:

There are countless reports of the many people who do not attend clinics – many of these cases are through people forgetting or not having information on who/where to cancel appointments. If people keep all their medical data in the one place then they have a higher chance of remembering or making contact. Both end-users & health systems benefit. If patients are also being taught to self manage at the clinics, while waiting at appointments, then this time is being used more efficiently. 

Section 5: Implementation

How should a patient first learn about personal health management?

From a patients perspective, the MediStori should be introduced to patients (with multiple or complex chronic illnesses or their carers) in hospitals while on the ward before being discharged or at outpatient clinics. Research shows that the majority of patients wait between 45 minutes to 90 minutes to be seen at outpatient clinics and this time could be used very effectively to educate patients on self management & engagement. The patient should also be referred at this time (or at discharge) to a local organisation or primary care setting where they can get more supports specific to their needs, and information leaflets can be put in the MediStori for them. It is then, at these primary care settings, where the patient can be educated on the importance of self-management & engaging with health professionals.

Who would do this?

This could be done by an outpatient or ward nurse, a CNS, an occupational therapist, a hospital pharmacist or a health carer specific to their needs. The MediStori should be recommended by all health professionals and organisations to be brought to all medical visits. This will ensure it is reinforced & patients or carers can feel reassured that it is okay to engage with their health professionals.

Who does the MediStori help?

The main people who will need, or benefit the most from it, will be those who have multiple chronic illnesses, or carers of same. Many people do not have just one chronic illness, but a combination of a few, for example, asthma/eczema or diabetes/obesity or arthritis/eye problems. Managing a chronic illness can cause stress & risk to a patient or carer and for this reason; the MediStori is not disease specific, but rather looks at the individual, with their individual needs. One of our recent online surveys completed by 44 people (aged 21-49 years) showed that 52% either had or cared for someone with chronic illness & that nearly half of all their medications were in liquid, gel or powder format so couldn’t be blistered & on another survey of 55 people, when asked if they would use a personal health organiser if recommended by their health care practitioner, 76% said they would. Research in relation to those with chronic illnesses & disabilities has also shown that many people do not only have one ailment but usually have a combination of a few different types of health problems: e.g. diabetes & heart conditions. Upon leaving a hospital, a diabetic may get a little notebook to jot down their blood sugars or log their insulin intake but they probably have other medical conditions they are trying to manage too. GP’s also identified with patients getting confused and frustrated with generic names of medicines & so we intend to work with pharmaceutical companies to help create & maybe sponsor add-on’s for this purpose. The National Carer’s Strategy [viii] highlighted that carers are extremely vulnerable & there is a major lack of resources for voluntary carers in Ireland. Many carers are family or friends which have been suddenly thrown into a position of looking after someone on a full/part time basis. Often there are fears of under/over dosing & the responsibility may lie with the carer if there is no paper trail of what the patient took last. If a paramedic were to turn up, for example, they may not be able to know what the patient’s medical history is or who the next of kin is. Upon speaking at a conference at Heart Children Ireland many parents said it was “a really frightening experience to be suddenly, not just a mum, but a carer and nurse all in one”. All parents agreed a huge aspect was when they had to get someone to mind their child but were afraid to because they were afraid the granny/sitter wouldn’t get the medications right (this exact same fear applied to the carer of a friend/family member). It was also identified that it was difficult to remember reasons/dates of GP visits or the outcomes of appointments. This actually applied to parents of healthy children too as many just wanted to record immunisations & general health issues. Upon speaking to paediatricians they felt it was critical to keep records to look back on for the future.

How many people could potentially need one?

One in three people in Ireland (>1.3 million) either have or know someone with the likes of asthma, diabetes, heart disease, cancer, depression and so on. For going forward & being proactive, the MediStori could also be given to new parents when they have their first baby, like the vaccination booklet. This could be given by a public health nurse or on the maternity ward itself, where the hip scores etc. could be recorded. For each child thereafter, a new booklet for each child could be given out, to be put into the folder.

The five major groups in Ireland that need a personal health record system

  • Chronic Illnesses –1.3 million+
  • Disabilities –320,573
  • People with both Chronic Illness & Disability–274,762
  • Carers–140,000
  • Parents of new babies–76,000

Can it be used in conjunction with other products/services to manage health?

Of course. There is a solution for everybody out there & people should use a combination of different tools to help manage their health if the needs be. The MediStori can be used in conjunction with many of the toolkits already available.

What about technology?

The fact that the MediStori is paper based distinguishes it from the 40,000 medical apps already out there & our vision to integrate self management supports for end-users, through promotion of it in hospitals & primary carers. There is substantial evidence on the benefits of PHR’s and on self management programmes across the world but everybody keeps looking at technology instead of the critical importance of educating all end-users on the importance of having data to hand, not just in emergency situations but for every day health management. PHR’s need to be recommended by health practitioners at every level – and support groups need to know what to recommend. We are working with key stakeholders within both public & private sectors to have the MediStori available at outpatient clinics, at discharge level & through pharmacies. The key is the type of technology that should be used at the next stage – and this will be down to the patients or carers to help develop this to bring this along.

What are the biggest challenges or barriers?

For any personal health record system to work effectively, it needs to be integrated on a national level, to make it easy on any patient or carer to be able to share their information wherever they may be. Challenges may arise due to systems already in place, but all of these systems can easily be integrated into the one system – teamwork, collaboration and education are the success keys.

Section 6: Conclusion

There is a huge interest in the “personal health management” area, but vital components in other systems and solutions have consistently seemed to be overlooked:

  • Using simple method of what we all do daily anyway: writing things down
  • Help with the ON-GOING management of one’s health, not just a back-up of records
  • Filing & storing of medical information in today’s format
  • Patients & carers habits, where they visit for health advice & who’s advice they take
  • Accessibility for paramedics to access information in case of emergency while not being restricted by passwords or electricity
  • Being able to see history all on one unit at a glance (unlike apps)
  • Reducing responsibilities & costs to pharmacists related to blistering
  • All members of a family able to use it & see it as required
  • Looking at the all of one’s health issues together, not as separate issues
  • Seeing a person’s own medical story from chapter to chapter rather than pinpointing one or two aspects at different stages in one’s life depending on which GP or hospital they visited
  • But most importantly the four main issues in relation to the above that cost people’s lives & cost health systems billions each year are
  • Medication non-adherence
  • Prevalence of chronic Illness
  • Breakdown of communication Between Health Care professionals themselves & with the patient/carers
  • Digital divide between patients

These issues need to be looked at together & not as separate issues as is currently being done. The MediStori does this and so provides this critical link between clinics, doctors & pharmacists, while also allowing the patient look after their on-going medications. Empowering the patient, reduces risks, costs & most importantly, can even save lives. When the technical aspect of the MediStori is launched & all of these solutions are incorporated, the added bonus of being recorded for forwarding to doctors or for patients future reference will be available to create the ultimate, encompassing personal health management system. There is an urgent need for a unified solution, which is recommended, recognised & used by all. This will ensure patients or carers feel comfortable bringing the MediStori into hospitals and not feel intimidated, as many do feel currently. We know that nurses in clinics are listened to by patients and if they can endorse the MediStori across the country, this will be key to ensuring it is used, it becomes habit forming & therefore reduces the health systems costs & saving lives. It is about being proactive, not reactive. It is about listening to the patients and carers needs, not just wants. This is not another typical medical product! It is a personal miniature “hospital” chart to help patients, carers, health systems & health care professionals work together for the same result: to save time, to save money, to save lives.

Thank you for taking the time to read this. Even if you yourself are a health care professional, we all have our own MediStori, and we deserve the right to write our own chapters too.

 So, I ask you, what’s your MediStori?

References

[i] https://www.ahrq.gov/news/newsletters/research-activities/jun12/0612RA32.html

[ii] https://www.forbes.com/sites/howardgleckman/2013/02/18/failure-to-communicate-why-seniors-are-readmitted-to-the-hospital-so-often/

[iii] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068890/

[iv] https://www.euro.who.int/__data/assets/pdf_file/0006/96468/E91878.pdf

Personal Case Review

Why PHR’s Need to Be Recommended at Discharge & at Outpatient Departments

Take Eoin, age 69.

Eoin is told he can go home after a 9 week stay in hospital & has since been diagnosed with left heart failure, COPD & hormone deficiencies. Prior to his stay he was on a combination of pain & muscle relaxant medications due to having previous spinal fusions. Upon discharge the registrar hands him a prescription which shows a list of 22 medications in total. It includes 2 types of inhalers, 2 types of pain patches, a hormone gel, nebulas, oxygen & countless amounts of pills. Eoin asks why he is taking certain medications & he is quickly talked through the list, explaining what each medication is for. Asking about any side effects or if there could be problems when taken together, the registrar says there shouldn’t be as he has been on them in hospital. He did mention that one of his medications would probably make him urinate more often. Eoin absentmindedly asks out loud how he was going to remember to take all of them & the registrar suggests talking to his pharmacist as they could do a service called blistering. Eoin is then told about the many clinic appointments he would have to attend to manage each of the chronic illnesses separately. Eoin is then told not to drive for a minimum of 3 months as he was still a high risk from being diagnosed with left heart failure. The registrar then says goodbye & leaves explaining that he has to go tend to other patients.

By the time Eoin is due to be collected by his partner, Joan, he has forgotten all but one or two things the registrar had said to him and his wife is very concerned that she won’t be able to manage all his medications properly. She asks the hospital could she speak to the registrar but after being left waiting three hours waiting for him, they decide to just go home.

Eoin now goes into his pharmacist & he tells them about his worries about the medications. The pharmacist talks through the list & says there are 2 medicines that can’t be taken together [contra-indications] so he rings the hospital for clearance & changes them accordingly. There are also 3 medications which Eoin said he used to be on for his back pain but the pharmacist explains they are still on the list just under a different brand name. Regarding the issue of medication management he explains to Eoin that they can put all of his pills into organised containers for him per day of week & per time of day, but as he was on so many, they would have to do it week by week. This was a free service they provided but they also had to allow a day or two’s notice to do so. Eoin decided to try this option as it would help Joan.

He was told to come back after an hour or so to allow them to do the initial pillbox for him. While waiting in a coffee shop nearby, Joan asks how he was going to remember to take his inhalers & patches & gels – could they be blistered too? Some of the patches had to be put on for 3 days and taken off for 3 days, some were only 12 hours on and 12 hours off & his gel was only a third of a sachet on different areas of the body each day. So when they went back to collect the prescription Eoin asks the pharmacist about any other solution to help him with his other medications. The pharmacist suggested writing them down.

After a few days of trying to settle in, Eoin started feeling nauseous. He was very concerned & rang his GP. The GP asked him about what medications he was on & Eoin lists out those that weren’t in pill format as he had no boxes for the pills as they were in the “blister-pack” done by the pharmacist. Eoin had mislaid the little booklet that came with it. The GP rang the pharmacy to find out & rang Eoin back to tell him that one of the side-effects of one of his pills was nausea & that this was written on the little leaflet that came in most medication boxes. The GP decided to change the medication as Eoin could not afford to lose any more weight with his heart failure & he faxed a new prescription to the pharmacist. The pharmacist then had to ring Eoin to tell him he would have to bring in his “blister-pack” as they would need to empty it & start again because of this new drug.

Joan was his main carer for the first few weeks as he was very weak & slept a lot. On one occasion she asked her son Stephen to come in during the day to help out as she had to run errands. He came in & a few hours later gave his dad some medications from the “blister-pack” marked as “Noon”. When his mum came home, she was in a complete panic because she had given Eoin his morning medications only two hours previous as they had woken later than usual. She rang the GP & while he confirmed Eoin shouldn’t have any adverse side effects, he advised that they set up a system in the house to ensure it didn’t happen again. He didn’t advice on what type of system could help them.

At Eoin’s first appointment with the COPD clinic 4 weeks later, they asked him how he was getting on with his inhalers. He said he didn’t feel he needed them and had stopped taking them. They were shocked as he was supposed to take the brown one always as a preventer and the blue one only if he was wheezy. He said he was getting them confused and couldn’t remember if he’d taken them or not so sometimes didn’t take the chance. They decided then to book him in to the asthma nurse to make sure he knew how to take them. When he said he couldn’t drive for a time and could he see one that day, they said that they couldn’t fit him in that day. The nurses asked about how he was getting on exercising and using his oxygen and he said he could only use it in one area in the home and didn’t leave the home much because of this. When they asked about the small carry tank he explained because of his spinal fusions he wasn’t able to carry or pull any weight. They just told him he would have to try to make more of an effort as he needed to build himself up.

When they asked him about his medications, he just handed over his pillboxes and medication bag and they rang the pharmacy about them. They decided to change two of his medications at this clinic. This meant going back to the pharmacist again and changing the pillboxes.

Eoin then went to his heart failure clinic and they were shocked to hear Eoin say that he felt much better and had stopped taking one of his lung medications, Frusomide. He told them it made him urinate far too often and he didn’t see the need for it. They explained to him that if he did not take this medication there was a high chance he would be hospitilised over and over again, as this medication kept the fluid off his lungs that was being caused by his heart failure. Eoin did not know the seriousness of the need for this medication & immediately realised what danger he had put himself in. This was never discussed at the previous COPD clinic appointment.

In the next six months, 2 more clinics, 2 cancelled clinics due to no transport, 1 missed clinic as he lost his letter, many changes of medications [& pillboxes: at no extra charge], 2 mishaps of personal medication mismanagement, 3 GP visits and 2 hospital admissions followed. On each clinic appointment Eoin would be told about his medications but wouldn’t remember most of it by the time he got home. His pharmacist & GP had to change his prescription on two occasions after clinic appointments due to contra-indicators. When ambulances arrived previously at his home when he collapsed, Joan had just handed them his pillbox and a bag full of other medications, including OTC drugs, vitamins and drugs he probably hadn’t taken in a year or so. Upon being admitted to hospital, they had to ring his pharmacy & his GP to confirm what he was on & his medications were again changed.

This cycle of all health care professionals controlling Eoin’s health continued until his daughter decided this time she had enough of people treating everything separately – and not him as an individual patient with multiple chronic illnesses, with many medications. So she created a specific, simple to use, medicine diary for him. She sat down with him and filled in all his medications he took in the morning, in the afternoon, in the evening and at night. They went to the pharmacist for advice & the three of them together wrote beside each medication what it was for, why he took it and if it was an essential or only as required medication. He then started using it. He simply wrote the time he took it beside the medications. There were enough of these “tick the box” type slots for the entire week. When the week was up, he just tore off the right hand side of the sheet and the medication list stayed in place. She also put only his medications he took every day into a little cooler bag for him. She wrote on the front of his little booklet his name, his hospital chart number & consultant name, what he was diagnosed with and stuck his most recent prescription to it too. Eoin soon started knowing the names of his medications, what they were for, when to take food with which and if he woke up later, knew the spaces between taking the next round of medications. He also stopped forgetting which inhaler was for which.

But, it was when Eoin collapsed and an ambulance arrived that the true value of this little memo came into play. They were able to see not only what he was on, and what he had taken that day, but the last time he had taken something! They were able to ring the hospital ahead with his chart number & say what he was diagnosed with. And they didn’t have to ring his pharmacy nor was GP for a list of his prescriptions, as this was stuck to the front of his booklet. He was also able to tell them which inhaler he needed because he felt wheezy on the way to the A&E.

In the 6 months of Eoin being treated, not one health care professional that dealt with him recommended an “App” as a solution to help him. And when asked if they knew of one, they didn’t.

In the 7 years of Olive caring for her children not one health care professional that dealt with her recommended an “App” as a solution to help. And when asked if they knew of one, they didn’t.

Case Study Conclusion

This Medicine Memo was still being used by Eoin (until just earlier this year, when he sadly passed away suddenly). All of his doctors, nurses and pharmacists have said it was worth its weight in gold. It doesn’t change the range of problems that came into that story but it does make a very good starting point to start making these changes, for him, as an individual. And it does empower the patient therefore giving them the option to discuss their health options with all their health care professionals involved, and create the vital missing link between them all.

What Needs to Change?

All health care professionals talked Eoin through his list of queries & not once wrote it down for him.
Saying there shouldn’t be any side effects (all medications can have side effects)
Only solutions offered were to write it down or “blister-packs”
Telling patient about clinic appointments and not addressing how he would get there
Separate clinic appointments for each chronic illness
Too busy to talk, moving to next patient – makes patient feel like they’re time wasting
Leaving carer/patient waiting three hours for discharge consultation
Contra-indications of medicines prescribed by hospital
Pharmacy having to waste time and money ringing hospital
GP having to waste time & money ringing pharmacy
Pharmacy having to waste time ringing customer
Hospital having to waste time ringing pharmacy
Branded names confuse patients
“Blister-packs” taking time for pharmacist & requiring waiting for patient
“Blister-packs” not cost effective for pharmacist
No other solutions from pharmacy for other medications
No offer of technology solution or personal health records from anyone
No system of communication between carers or patients or carers and carers
No list of side-effects because pills were taken out of packets and put into pillboxes
No last time taken option for patient
Change of medications required complete haul over of pillbox – time/costs to pharmacy
Patient no knowledge of why taking medications or when or how
Still no help for him offered even though medically not allowed drive
Eoin losing his appointment letter & list that came with pillbox
No solution offered to him with oxygen canister because of other chronic illness of back pain
No knowledge of what the names of his medications were nor which one was for which
It hindered paramedics trying to find out what he was diagnosed with and medications he was on

Authors Note:

Eoin was Olive’s late adopted dad, whom she cared for in far more ways than just medically. Sadly Olive’s dad passed away on May 17th 2014. Olive hopes that the MediStori will live on in memory of Eoin, to help other daughters, moms, fathers, sons, brothers, siblings, cousins, relatives, friends and neighbours care for their loved ones.

Olive O'Connor

Creative Founder, MediStori
Put simply, I am an expert in the field of personal health management, not by academic or career, but by personal experiences. I am a mum of three daughters, whom each have complex chronic illnesses. My youngest daughter has gone through heart surgery, my middle daughter has juvenile arthritis & my eldest daughter suffers from sporadic high blood pressure & flushing. Each also has other chronic illnesses such as asthma, psoriasis, ear, nose & throat conditions & Raynaud’s phenomenon. I myself have a heart condition, asthma & arthritis, and only very recently my husband had a TIA (stroke). The challenges of trying to manage symptoms, appointments & medications are tough. I have experienced first-hand the break down in communications & the difficulty in linking from one clinic to another. I am proactive and solution focussed by nature, so instead of just moaning about the issues I strive to create positive change. Please see www.oliveoconnor.com for more information about my achievements to date.