Health Watch

The Sri Lankan Personal Health Record (PHR) system:

Medical record keeping, no longer an issue!

Ishara JAYAWARDANE

There is a saying that ‘Truth is stranger than fiction.’ Remember the time we used to watch Star Trek and Star Wars and all those crazy films? Now envision a world where every thing is carried on our mobile phone. Imagine that tiny device holding every detail of our personal lives. Yes, it is possible and it will happen very soon in the future.

Just think of the convenience. Information is fast reaching a new stage of mobility. Daily News recently walked into the future at a Press Conference held by the Sri Lanka Medical Association. While I was sitting there I could appreciate how audiences felt when watching Jurassic Park.

The Personal Health Record System is now in Sri Lanka. This is all due to Dr. Deepal Wijesooriya’ s pioneering efforts. The Inventor of the Sri Lankan Personal Health Record System, Wijesooriya has studied this system in other countries and now has created it in a way that is applicable to Sri Lanka and the needs of Sri Lankans.

“This press conference has been convened to increase awareness on this novel programme. It is the Personal Health Records System. Information in the form of hard copies is being replaced by this new programme.

This is a quantum leap in Sri Lanka. The future of medicine may even be in your cell phone,” said President of Sri Lanka Medical Association, Dr. B.J.C Perera.

Easy access

Now more than ever before the connection between computer science and medicine has gone to a higher level. Information technology is playing a pivotal role in modern day medicine and its treatment. No longer are sheets and sheets of medical information bundled up in a bag. One click of the button and the information is on the computer screen.

It can be accessed anywhere in the world. If you are a Sri Lankan visiting India, you can easily access the information in India via website. You don't have to physically carry the information with you when traveling. “Medical information is stored on the web, a print out is taken and shown to the doctor. Information stored as hard copies in hospitals are difficult to retrieve,” said President Health Informatics Society of Sri Lanka, Professor Vajira. H.W.Dissanayake,

Sometimes when asked questions related to the patients treatment history, the patient may not know how to answer. So with the limited time the doctor has, he/she may be unable to make a correct diagnosis. “ Sometimes the patient has to go to multiple doctors and when asked questions related to treatment the patient does not know how to answer which makes treatment difficult. The usage of Electronic Medical Records is going through a rapid transformation,” said Inventor of the Sri Lankan Personal Health Record System Dr. Deepal Wijesooriya.

There are two types of patients: Patients with Medical Records and Patients without Medical Records. In the case of Patients with Medical Records - consultative time is productive. In the case of Patients without Medical Records - Consultative time is less productive. Patients with Medical Records facilitates less errors and active participation. Patients without Medical Records registers more errors and passive participation.

The Personal Health Record is initiated and maintained by an individual of his own health. “PHR version 1.0” is an electronic web based system which is tailor made to Sri Lankan Health Needs. Any Sri Lankan who has an email address and internet accessibility, can use this system to keep their health records online. This system has capability to share information with other systems like Electronic Medical Record (EMR), Hospital Information System (HIS) and laboratory systems. Profile owner can keep his /her health related events and medical records in a secure place due to PHR version 1.0. Because this system is password protected and can only be accessed by authenticated individuals decided by him.

Sudden cardiac death in young adults

Dr. Yanushi Dullewe Wijeyeratne BMBS(UK), BMed Sci Hons (UK)

Atleast 12 young people die suddenly each week in the UK of undiagnosed cardiac conditions. Instances of young Sri Lankans dying suddenly with no apparent cause are heard frequently, but the exact incidence is unknown. Diagnosis of the cause of unexplained sudden death is often difficult, even after post mortem. The majority of these deaths could have been prevented. Many victims may have had symptoms that had not been recognised.

Acquired causes of sudden death can vary vastly, and drug-induced causes should always be excluded through a thorough toxicology screen. It is vitally important for the bereaved family to know the cause of death to help in their grieving process. There can be many unanswered questions after a young person dies suddenly. The post mortem examination may not always provide the answers.

Was it really a ‘heart attack’?

Incidental findings at post mortem may sometimes be mislabelled as the cause of death. For example, a myocardial infarction, or ‘heart attack’can only be attributed to the cause of death in someone who has previously been fit and well if there is definite evidence of complete occlusion of a coronary arteryat post mortem, or if the characteristic changes in heart muscle that indicate that a heart attack has occurred are seen when the pathologist examines the deceased heart.

Many people have a degree of plaque build up in the coronary blood vessels with age, but this plaque build up will not cause a heart attack or sudden death unless the plaque has ruptured or caused obstruction of that blood vessel. However, there have been many instances even in the UK when the cause of death has been mislabelled as myocardialinfarction (heart attack) in people who have died suddenly. On subsequent examination of the deceased heart by a specialist cardiacpathologist, it is found that the cause of death is entirely different and not related to coronary artery disease.

Diseases of the heart muscle, the most common of which is hypertrophiccardiomyopathy (HCM), account for most cases of sudden cardiac death in young adults under the age of 35 years. Beyond 30-40 years of age,coronary artery disease rapidly increases in frequency and overtakes hypertrophic cardiomyopathy as the commonest cause of sudden cardiacdeath in adults with advancing age.

Apart from diseases of the heart, other causes of sudden death that need to be considered when a person dies suddenly include seizures or fits that may have led to prolonged loss of consciousness and death (known as sudden death in epilepsy).

Sometimes no definitive cause of death is found on postmortem and the heart is entirely structurally normal, in which case the death may have been due to a rhythm abnormality or electrical problem in the heart. Certain inherited conditions known as cardiac ion channelopathies predispose the heart to fatal rhythm disturbances leading to cardiac arrest. Examples of these conditions include Brugada syndrome, the inherited Long QTsyndromes and the Wolff-Parkinson-White (WPW) syndrome. These conditions are very rare and may often be undiagnosed, but they can still account for a notable number of sudden cardiac deaths in young people.

Brugada syndrome most commonly affects young South EastAsian males, although cases of Brugada syndrome in Sri Lankans have been reported. It typically causes death during sleep in affected individuals intheir30s-40s. Natural slowing of heart rate during sleep may be a contributory factor. Wolff-Parkinson-White syndrome also pre disposes the heart to fatal rhythm disturbances, but via a different mechanism that involves an extra abnormal electrical pathway in the heart.

Inherited long QT (LQT) syndromes are the most common and best-understood ion channel disease of the heart pre disposing to sudden death.‘LongQT’ refers to the pattern on an affected person’s ECG. One type of inherited long QT syndrome typically causes death on exposure to cold water and exercise. It should be suspected when a young person dies whilst swimming for example, or if a young person blacks out or loses consciousness during swimming. If diagnosed, drug therapy can be very effective in preventing sudden death in this type of long QT syndrome.

Another type has been associated with death following exposure to intense emotion or sudden loud noises, for example Long QT syndrome type 2may be suspected if a person drops dead suddenly after having been woken up by a loud alarm clock. It should also be suspected when a young person collapses or dies suddenly immediately after receiving unexpected bad news, or whilst being very excited or laughing.

In Long QT3, which is similar in aetiology to Brugadasyndrome, the slow heart rate whilst sleep can trigger fatal arrhythmias and lead to sudden death during their sleep.

Heart muscle disorders / Cardiomyopathies

Cardiomyopathies refer to structural diseases of the hear muscle, which may or may not be inherited. Hypertrophic cardiomyopathy is an inherited condition causing focal thickening and scarring of the cardiac muscle, which in severe circumstances causes obstruction of blood flow out of the heart. It affects about 1 in 500 people and can affect both males and females of any ethnic background. Symptoms can begin at any age, but may not appear until mid-life (30s-40s). It is the most common cause of sudden cardiac death under 35 years of age, especially in athletes.

In the United States, up to one third of sudden deaths during exercise in young competitive athletes have been shown to be due to HCM.Other cardiac conditions that can lead to sudden cardiac death during exercise include coronary artery anomalies, and arrhythmogenic right ventricular cardiomyopathy (ARVC).

People with a cardiomyopathy or cardiac muscle disorder may not have any symptoms at all, and in some circumstances, the first symptom maybe sudden collapse and death during exercise, for example during competitive sport or marathon running. For this reason, many international sportsorganisations do not allow athletes to compete unless they have been screened for these conditions.

Symptoms to look out for, if present, include feeling faint,dizzy or even blacking out during physical activity, excessive shortness ofbreath disproportional to the degree of physical effort, exertional chest discomfort or palpitations on exertion. Anyone who has experienced these symptoms should seek medical advice and be screened for a potential underlying cardiac condition that could put them at risk of sudden cardiac death.

Management of the risk of sudden death

If diagnosed, drug therapy can modify disease progressionand lower the risk of sudden death in some cardiomyopathies and in certain types of LQT syndromes, and cardiac ablation procedures can destroy the extra electrical pathway in WPW syndrome. However there is currently noproven treatment for Brugada syndrome apart from lifestyle measures that can lower the risk. The only way of definitively preventing premature sudden death in Brugada syndrome is by implanting an implantable cardioverter-defibrillator (ICD).

ICD s are also indicated in anyone who has already had acardiac arrest and been successfully resuscitated, and in anyone with anyinherited cardiac condition at high risk of sudden cardiac death despiteappropriate risk modification. An ICD is a pacemaker-like device that isimplanted under the skin, and can deliver a shock if the heart does go into alife-threatening rhythm, thereby restoring the heart’s normal rhythm. ICDs arehowever not without risks, including lead displacement, infection and damage tothe heart during implantation,not forgetting the impact on a young person ofhaving a life long medical device. Therefore the decision to implant an ICD should never be taken lightly.

Minimising the risk of sudden cardiac death in sport

The increased stress on the heart during intensive physical exercise and regular high intensity training can trigger a sudden death by aggravating an undetected cardiac abnormality. It must be stressed that sportand regular physical activity is healthy on the heart and must be encouraged, however in a minority of individuals who have certain inherited structural or electrical abnormalities of the heart, sport can trigger fatal arrhythmias and death.

This is why education and screening of any young person who engages in regular high intensity exercise is crucial to rule out any potential undiagnosed underlying heart condition. Although some affected people may have had symptoms like blackouts, dizziness, palpitations, chest pains or disproportionate shortness of breath on exertion, many individuals dying suddenly had not experienced any symptoms, and cardiac screening to look for these conditions predisposing to sudden cardiac death is the only way that could have potentially saved their lives.

The International Olympic Committee (IOC) and the European Society of Cardiology recommend cardiac screening for any young person taking part in competitive sport. This may include schoolchildren over the age of 14years who take part in national or international competitive sport. The reason that screening is not encouraged in younger children is because the results canbe inconclusive before adolescence. In some countries such as Italy, screening is mandatory before any competitive sports. If a condition that puts the person at risk of sudden cardiac death during exercise is diagnosed, participation in competitive sport is restricted, amongst other preventative measures to minimise their risk.

Improving awareness and family screening

International clinical guidelines strongly recommend screening for potential inherited cardiac conditions in any first degree relative whose family member has been diagnosed of an inherited heart condition such as one described above, or if they have had a family member that died suddenly of an unexplained cause. This also includes relatives of family members who have had motoring accidents, if there is a possibility that the accident may have been caused by the family member having a blackout whilst driving.

A simple ECG following history and physical examination by a clinician experienced in this subject area can effectively screen for inherited cardiomyopathies or conditions predisposing to heart rhythm disorders, even in asymptomatic individuals. This may be followed by an echocardiogram (ultrasoundscan of the heart) for further information. For some individuals however, further diagnostic tests and imaging are needed to reliably rule out a potential lethal cardiac condition.

A final point of caution is that, in athletic individuals, there can be a lot of overlap between normal, healthy athletic adaptation of the heart with exercise, and pathological changes on the ECG and echo. Hence interpretation of any screening tests by a cardiologist or a physician experienced in interpreting such tests is essential before making any diagnosis which can potentially have a major impact on an individual’s lifestyle.

[email protected]

(The writeris a medical doctor at St George's Hospital in London and has authored severalarticles published in international scientific journals)

Daily News Medical Crossword No: 56

Across

1.World AIDS Day, is observed in this month, every year.(8)

8.A medical condition which is associated with obesity.(12)

10.Fill in the blank. Naltrexone Hydrochloride is used to help with patients with ------(7) dependence.

11.Obesity is associated with cancer in this organ.(5)

15.As the health field makes significant advances every day, this aspect has become an integral part of nursing in recent years.(8)

16. An epidemic occurring worldwide or over a very wide area, crossing international boundaries, and usually affecting a large number of people.(8)

Down

1.Deoxyribonucleic acid.(3)

2.Optical Coherence Tomography (OCT) is a scan that measures the thickness, of this part of the eye.(6)

3. Multiple sclerosis is an illness that can affect this organ of the body.(5)

4. This is one of the top ten caring behaviours.(8)

5. A hormone produced by the beta cells of the pancreas that permits glucose to enter cells and helps the body use glucose for energy.(7)

6. A condition in the liver, which is associated with excessive use of alcohol.(9)

7. Cardiopulmonary resuscitation.(3)

9. Clouding of the lens inside the eye which leads to a decrease in vision.(8)

12. The profession or practice of providing care for the sick and infirm.(7)

13. Fill in the blank. The cessation of normal circulation of the blood due to failure of the heart to contract effectively is known as cardiac ------- (6)

14. The protective sheath or layer around nerves.(6)

Crossword created by Dr. Kelum Pelpola, Coordinated by Edward Arambewala Send your entries to reach us by April 1, 2013 to:

Daily News Medical Crossword No: 56, Healthwatch, C/O Features Editor, Daily News- Editorial, No.35, D.R.Wijewardena Mawatha, Colombo