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Use of IT in epilepsy care finally bearing fruit
The establishment in 2003 of a nurse-led epilepsy care service facilitated by IT is transforming the service but it has been a long journey, according to Dr Colin Doherty, Consultant Neurologist, St James’s Hospital, Dublin.
Dr Doherty delivered a talk titled ‘Epilepsy Care and the Trials and Tribulations of Information Technology’ at the recent Spring Conference of the College of Psychiatrists of Ireland, which was themed ‘Psychiatry in the Digital Age’.
Epilepsy is a common condition affecting around 40,000 people in Ireland but is only medically controlled in about 15,000 of those. Dr Doherty said the introduction of IT systems that more efficiently address patient needs had been difficult because it challenged existing practices.
However, raw patient data has now been transformed into a resource that is easy for clinicians to use. Dr Doherty said the remote care of epilepsy is facilitating initiatives that previously were not possible.
“In 1992, when I was an SHO, it was very rare to get a call from a patient,” said Dr Doherty. However, telephone encounters are common nowadays and this is changing the service, he said. The number of telephone encounters is growing and there are now more virtual meetings than face-to-face encounters at the clinic in St James’s, he added.
In 10 years’ time, predicted Dr Doherty, the vast majority of chronic disease management will occur by means of clinicians communicating with patients sitting in their own kitchen. This trend will render redundant the debate about parking at the new National Children’s Hospital at the St James’s campus, believed Dr Doherty.
A particular challenge has been to identify which patients are attending the clinic and whether these patient visits are always necessary, outlined Dr Doherty. “Only 8 per cent of patients have more than five OPD encounters per year. We need to find out why these people are using up so much time.”
Dr Doherty spoke about the realisation of a proposal to the HSE to “marry” whole-genome sequencing in 100 cases of severe epileptic encephalopathy for precision diagnosis in rare syndromes, as well as the development of a patient portal that will give patients the ability to add to their own medical record.
A software company, Ergo, has built the technology for this initiative. It has made a real difference to patients, he said. “People who live far from Dublin have to take a full day off to go to the clinic in St James’s. It is a far better option [for these patients] to ring and get an expert on the phone.”
The use of this facility has enabled doctors and patients living in areas far from Dublin to interact with each other while looking at the same electronic record on screen.
“This option has halved the number of patients that have been coming into the hospital,” said Dr Doherty.
Healthcare awaits ‘patient-centered’ IT platform that is suitable for all
The implementation of effective and supportive IT is transforming healthcare but a broad platform has yet to emerge, according to Dr Tony Shannon of consultancy company Frectal.
Dr Shannon, who trained in emergency medicine, spoke on ‘21st Century healthcare: The platform that will transform’ at the recent College of Psychiatrists of Ireland Spring Conference, which was held in Co Kilkenny under the theme ‘Psychiatry in the Digital Age’.
During his talk, Dr Shannon said he wanted to focus on an IT platform that would “transform the way we live and work forever”. This must be done in the context of the pressures on healthcare systems in the 21st Century. “It must be patient-centred, and integrated care is the only way to survive,” said Dr Shannon.
“The economic crisis has put systems under pressure to change, and that is not going to get any easier. In fact, the numbers point to it getting more challenging.”
The information age is leading to changes in medical and other professions, which have been described in the book The Future of the Professions by Richard Susskind, said Dr Shannon.
For example, in the UK, there is a mental health solution called ‘The Big White Wall’, which facilitates people to go online and connect with peers who have similar issues and to do so anonymously. The website gives people the tools to enable them to care for one another, said Dr Shannon.
Dr Shannon told the story of Dr Joe McDonald, a colleague and psychiatrist based at the Newcastle University Centre for Health and Bioinformatics. Dr McDonald got the train one morning from Newcastle heading for a meeting in London, said Dr Shannon.
He realised while on the train that he had left his asthma inhaler at home. He went online to see whether there was any company that could help him. He found a company that dropped off an inhaler at King’s Cross station, where he picked it up and continued to his meeting. “These kinds of changes are happening across healthcare,” said Dr Shannon.
However, he said solutions in healthcare are not easy, as they often must address complex and even chaotic problems. He said there is also the issue of the medical IT industry being full of proprietary products that are holding healthcare back, and a solution must also be found to deal with this.
In his Frectal blog, Dr Shannon said he writes about the need for a platform that will transform healthcare. This platform must have several properties, including being so easy to use that people want to use it. It must be easily integrated with what is already there and it must be openly shared. This kind of solution will require leadership to drive it, but it will happen, said Dr Shannon.
Dr Shannon said that he left his job as a consultant in a hospital emergency department in Leeds to take up a role as Chief Information Officer at Frectal, where he heads a strategy on IT-led change.
He cited the city of Leeds as an example of what can be achieved. In this city of one million people, which is a similar size to Dublin, the Leeds Care Record was introduced in 2012. This provides five organisations in Leeds with the means to share information around a single patient record, said Dr Shannon.
The system has facilitated, for example, a ‘virtual ward view’, which allows doctors to see who is in a hospital ward at any time and what their needs are. “We need to work smarter, as we can’t ‘flog’ people any harder,” said Dr Shannon. The Ripple Programme — a Leeds-based initiative set up to support NHS organisations to develop an open-source digital care record — he added, has taken the lessons learned from what has been achieved in Leeds to share them elsewhere and build what it calls “an open, integrated health and care platform to support 21st Century care”.
“Ripple is just one of several initiatives in the NHS pushing for a new platform in healthcare that will change the market,” said Dr Shannon. “In Ireland, I’m not sure that they are doing it right,” he added.
The potential for improved efficiencies in healthcare from the introduction of IT initiatives is such that it justifies a substantial budget allocation, said Dr Shannon.
Tourette syndrome treated by habit-reversal training
Delaying the urge to perform a ‘tick’ is an effective way to treat Tourette syndrome, according to Prof Andrea Cavanna, an expert on the neurology and psychiatry of a syndrome which affects up to 1 per cent of people.
In his address at the College of Psychiatrists of Ireland Spring Conference, Prof Cavanna of Birmingham University and University College London, UK, outlined the history, character and treatment methods for the syndrome in his talk, titled ‘The neurology and psychiatry of Tourette syndrome’.
The movement disorder known as Tourette syndrome was first described by Gilles de Tourette in the 19th Century. It is now known that ‘Tourette’s’ is an umbrella term for something with many phenotypes, he said.
The syndrome is a variant of normal human development and it is notable that up to 20 per cent of children have ‘ticks’, said Prof Cavanna. For most of these children ticks are transient, but ticks stay in between 0.3-to-0.9 per cent of people. There are, therefore, children affected by the syndrome in every school.
Two video clips were shown of people suffering from severe ticks — this footage demonstrated how people can face social isolation and problems in life. Ticks can sometimes result in self-injurious behaviour, such as when the head is thrown repeatedly from side-to-side, said Prof Cavanna.
The syndrome is also associated with socially inappropriate behaviour, such as laughter at funerals and job interviews, and inappropriate comments. “The brain is thinking, ‘what would be socially inappropriate in this situation?’” said Prof Cavanna. “Then an urge develops to say that, they over-mentalise and this results in an urge for certain ticks.”
The use of habit-reversal training, where the patient’s urge to perform the tick is delayed for as long as possible, has been shown to be a difficult but effective treatment, said Prof Cavanna.
Understanding impact of online activity on mental health
Psychiatrists and other healthcare professionals have a responsibility to understand how use of mobile devices is affecting patients’ mental health, psychologist Ms Antoinette Moriarty told the Spring Conference of the College of Psychiatrists of Ireland.
A psychologist with the Law Society of Ireland, Ms Moriarty presented on ‘Avoiding the void: Psychological and emotional features of cyber behaviour’.
The presentation explored what is sought and unconsciously avoided when we replace face-to-face relating with virtual communication.
When considering the impact of technology on younger people, it is important to remember that the average attention span of a millennial (someone born in the 21st Century) is eight seconds, which is a second less than a goldfish, outlined Ms Moriarty.
Ms Moriarty leads the counselling service at the Law Society of Ireland. It is comprised of six psychotherapists and accommodates trainees regularly throughout their training. The field of psychotherapy deals with the ‘worried well’ rather than the mentally unwell, she outlined. Ms Moriarty said law students were good to work with, having a high level of education and curiosity.
It is probably not helpful to assume that cyber activity is always addictive and potentially damaging, emphasised Ms Moriarty, and cyber activity is a normal part of daily life now. Describing all who engage in cyber activity as ‘addicted’ is like saying people are addicted to air, she suggested.
There is a view that the cyber arena is dangerous for young people and this has been expressed by some prominent experts. For example, cyber-psychologist Prof John Suler has been quoted as saying that “when kids go into cyberspace on their own, it’s like letting your kids free in the middle of New York on their own”.
Ms Moriarty said that “we need to look at this as something that is non-pathological”. Some 2.1 billion people are online, which is 40 per cent of the world’s population. A staggering 25 per cent of three-year-olds are online daily.
“There is a responsibility for us to know more about how this is influencing the mental health of our clients,” said Ms Moriarty. This is relevant in areas such as dating and relationships, much of which is now played-out online.
Some of the young law students counselled by Ms Moriarty are meeting many partners online and experiencing intense relationships before having rapid breakups. She said there is a need to understand what is going on in this area and how it impacts mental health.
When Ms Moriarty asked the audience if they had heard of Tinder (a dating app), she was met largely by silence, puzzled sideways glances, and laughter by the wiser owls.
She continued that it is up to parents to set down rules for the online behaviour of their children. Humans are hard-wired for making connections with others, she added, and it is no surprise that we seek virtual connections. “We have a need for attachment and authenticity and the mobile phone has become the transitional object for children,” she said.
On the issue of cyber behaviour that appears to require intervention, she advised: “Banning is effective in the short-term, but is not effective in terms of self-regulation in the long-term. We should increase the face-to-face time with real people. That is the way to go.”
When children are permitted online screen time, it should be on the basis that this is matched by face-to-face time, she outlined.
“The take-home message is, don’t be afraid of this, it is only a medium and human beings will always be more important. Technology is not communication.”
Questions remain over legal liability in telemedicine
In Ireland, there is no legal definition of telemedicine and the scope of medical liability and negligence in the field is not legally clear, a senior solicitor told the Spring Conference of the College of Psychiatrists of Ireland.
Mr Mark Adair, a Senior Associate with Mason Hayes and Curran solicitors, Dublin, underlined this point during his talk on ‘Mobile medicine: Technology law challenges when providing distance psychiatric care’.
Mr Adair said there is an expectation among younger patients that medical care should be available through an app or a mobile phone. However, there is no specific legal definition in Irish law regarding the scope of telemedicine, although the EU has adopted a definition.
Mr Adair offered the theoretical example of a psychiatrist in Kerry conducting a video conference with a patient in Dublin, where the psychiatrist asks the patient to take their own blood pressure via an app and send it via the Internet.
The solicitor said there are several legal risks with this simple interaction, and multiple legal questions arise that require answers.
The questions include: Is the device approved by the EU? Is the practitioner based here or abroad? Is the practitioner licensed? Who owns the IP in the app? Is the app free? Is it a paying app? If it is a paying app, is a license then required? Is the technology that is used to analyse and transmit the data covered legally? Who is liable when there is a misdiagnosis? What happens if there is a security breach from patient to practitioner?
“There is no single answer to these issues,” said Mr Adair. “It depends on the situation, but you need to be aware of the legal position if you want to set up telemedicine services.” He said there is sensitive personal data that requires protection and the consent of patients to be used.
The EU is set to bring in more stringent requirements on how sensitive personal data is stored, said Mr Adair, with a new law called the EU General Data Protection Regulation (GDPR), which is due to come into force in May 2018. It is important that medical and healthcare professionals are prepared for the introduction of this law, said Mr Adair.
One stipulation under GDPR is that if medical professionals use an app, then it must have something called ‘privacy by design’ built into it. This is required to ensure the app provider is complying with data privacy regulations.
Confidentiality and security are also big challenges for telemedicine. The question is whether current technology is secure enough to protect the patient’s health data, outlined Mr Adair.
Public confidence in new technology is also critical, with trust in telemedicine services essential to its successful deployment, Mr Adair concluded.
Computer-assisted therapy reduces auditory hallucinations
The use of a computer avatar to mimic auditory hallucinations as a therapeutic aid reduces or eliminates hallucinations in patients and the benefits are lasting, said Prof Tom Craig in his presentation on a randomised clinical trial at King’s College, London, on avatar therapy for the treatment of auditory hallucinations.
Prof Craig is Emeritus Professor of Social Psychiatry at the Institute of Psychiatry, King’s College, London. He told the Spring Conference of the College of Psychiatrists of Ireland that, in the “early days”, distraction techniques were the therapy used to treat people with auditory hallucinations.
However, as the biological basis for the hallucinations became better understood, it became clear that a system of avoidance and fear of hearing the voice was driving the experience, Prof Craig said. The emphasis changed to trying to break the cycle of distress that comes with the auditory hallucination, he added.
Most people who hear voices have a relationship with the entity that produces the voice, said Prof Craig. The use of avatar therapy aims to make the voice hearer and the voice-producer more equal in the relationship, he said.
Under avatar therapy, there is a computer simulation of the voice that the person hears, said Prof Craig. The first session with the patient involves the use of a computer to search until a close match is found for the voice that the patient hears. There is also a match undertaken for what the entity producing the voice looks like, but it is not possible to be as accurate in this case, producing perhaps a 60 per cent match, he said.
The first three sessions are all about managing fear because people are very frightened by the voice they are hearing, said Prof Craig. The voice usually says abusive, critical things about the person.
Prof Craig said the therapist then plays the role of the ‘demonic persecutor’. The therapist speaks and the computer changes their voice to become the voice of the persecutor. At the start, the therapist doesn’t concede ground, he said, but then he/she shapes their responses to slowly cede some power over to the patient.
Patients had to have 12 months of treatment-resistant auditory hallucinations to qualify for the trial, said Prof Craig. They stayed on medication while the trial was conducted, and for many, the hallucinations lessened. “The early results are good enough to get money from the Wellcome Trust for a larger clinical trial,” said Prof Craig. The preliminary data has shown that patients see an improvement after 12 weeks and there is a sustained benefit.
Meeting speculates on future for ‘robotic doctors’
The question of whether an intelligent algorithm, or robot, might replace doctors in the future was the subject of a thought-provoking talk by Prof Anthony McCarthy, Consultant Psychiatrist, St Vincent’s University Hospital, Dublin, at the Spring Conference of the College of Psychiatrists of Ireland.
While robotic-assisted surgery is common in western countries, the question remains as to whether robots will one day fully take over from doctors in various areas of medicine, such as psychiatry.
Prof McCarthy said as long as people remain human, the robot doctor will be ‘in trouble’. He questioned how robots would approach a situation where a patient does not disclose information; he asked whether robots would be able to listen to people and judge their adherence to medication, for example.
“Psychiatrists have to best guess about what should be done and they have to tolerate partial knowledge, uncertainty and ambiguity,” said Prof McCarthy.
It seemed that psychiatrists need not worry about being replaced by a robot anytime soon.