Focus on research: Dr Colin Doherty, FutureNeuro

Colin Doherty, FutureNeuro
Colin Doherty, FutureNeuro

Putting the patient at the centre of their care and data management

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31 July 2019 | 0

Dr Colin Doherty is a consultant neurologist, lecturer and aprincipal investigator with FutureNeuro, the Science Foundation Ireland research centre for chronic and neurological diseases, hosted by RCSI. Here he talks about the Ireland’s position in neurological research and how asking the audience leads to more effective patient services.

FutureNeuro is one of the newer SFI research centres. Does this mean Ireland has been a laggard in neurological research?

Ireland is actually ranked eighth in the world for research into neuroscience and behaviour. FutureNeuro has brought together world-leading multidisciplinary teams from Ireland’s top universities with a research-active network of neurological clinicians in Irish hospitals. This collaborative approach with hospital teams and patient groups ensures highly relevant and engaged research.

Our neuroscientists, clinical neurologists, geneticists, cell biologists, materials chemists and computer scientists are some of the most cited researchers in their respective fields. We are working to address challenges such as genetics-based diagnostics; developing multi-targeting therapies to tackle currently untreatable diseases; using e-health to improve clinical outcomes; and the appropriate use of health informatics to provide population-based insights into suitable treatments.

Our understanding of epilepsy seems to come in two forms: medical exploration and clinical interviews.

Everything we have learned about epilepsy comes from those two fields, but the medical knowledge algorithm is getting progressively faster. In the early 90s, the amount of time it took to have double the amount of knowledge on a subject was about 20 years. Now, it’s nine to 12 months. So in a years’ time, we will know double what we currently know about epilepsy.

How do we keep on top of all that? You have to collaborate, you have to rely and trust that the people sitting beside you in different fields know their stuff, because you can’t know their stuff, it’s too much.

However, we also have to become experts in finding information, so instead of having to know everything, you can say, “I know where to look”, so you become an expert in information access rather than solid information knowledge. In a world where fake news is prevalent, this has become increasingly important.

You are a proponent of specialist nurses. Can you go into their role and importance?

This is an area that we can claim some uniqueness in Ireland. I’ve just come back from a European meeting where I was explaining care pathways here to epilepsy specialists and they were amazed by how much we were getting nurses to do.

There seems to be a very welcome shift in professional nursing towards specialisation in Ireland, so we have no trouble finding nurses who want to be specialists in epilepsy care whereas that’s not the same in Europe.

Our advanced nurse practitioners see patients and they make determinations about their care. They write prescriptions under the governance of someone like me who is a consultant, and then I deal directly with the 20% of cases that are more difficult diagnostically.

Previously, nurses had to have five or six years of experience before they could even start to become an advanced nurse practitioner. Now they can come straight from general nursing and do a masters, usually in a specialist disease, and it takes in other aspects, such as professionalism, research and chronic disease management. This made the pathway a lot smoother. You can get a qualification as a specialist nurse within two or three years, compared to the seven or eight previously required.

We have increased the number of nurses with a special interest in epilepsy from two to 30 in the last 10 years. We’ve certainly grown faster than anywhere in Europe and I would guess that this is possibly more nurses per head of population with epilepsy than anywhere else in Europe.

What that’s done is given patients access to specialists much faster because the number of people like me – neurologists with a special interest in epilepsy – hasn’t grown that significantly. That there are nursing specialists has suddenly opened the possibility of contact with experts to patients. This has never really been the case before, most of the time you had to transmit your instructions through a GP and the GP was that the de facto expert that the patient went to find out about their epilepsy.

GPs were saying this was ridiculous, that they weren’t experts in this area. Now we have nurses who stay in contact with patients by phone, e-mail or face-to-face. A project called the SENsE study done by Agnes Higgins and her colleagues at the school of nursing in Trinity that I was part of showed that having epilepsy nurses involved in patient care actually contributes to wellbeing, improved outcomes and patient empowerment.

You have advocated for a model of ‘patient-centred care’. What does this mean?

We asked patients and healthcare professionals what they understood by the term ‘patient-centred care’ and got vastly different definitions. I think the first step is asking patients to be involved in designing their care, so to them “these are the resources we have, these are the options we have for putting these people to work on various pathways, we need you to help us design those”.

At a very minimum, we think we understand patient-centred care when we’ve done that co-design process and we have care pathways that patients have actually designed. In fairness, we’ve done this already. Going back 10 years when we started the national epilepsy programme, at the height of the financial crisis, we were in severe trouble. Our health budget kept being cut but the HSE came to a number of groups looking after particularly chronic illnesses and said “we’ll try and preserve your budgets if you can show us that you could do things that actually are efficient. If you can do that, we’ll not just preserve your budget, we’ll give you extra”. That’s actually where it grew out of, so this growth in nursing numbers happened against the background of severe financial difficulties.

In July of 2010, we had a big meeting in Dublin with 40 health professionals, as well as 10 patients. We said we wanted to design a new epilepsy programme, but we needed their help and got some amazing solutions.

My favourite outcome came out of a scenario presented to the patients. We said: “Let’s say you have a seizure, you’ve never had one before, you don’t know anyone with epilepsy and you go to your GP. The GP doesn’t really know either, so they send you to the emergency dept, and you see a specialist. They say “you’re fine to go home but we’re going to give you an appointment to see a specialist neurologist”. You are sent home, no one has really told you much other than “you might have this condition called epilepsy, you don’t really know”.

Then we asked the patients, how long they thought was reasonable to get a follow-up with a specialist service.

The patients said within 10 days was reasonable, which we thought was fantastic because we thought people would want to be contacted immediately.

Since 2010, consistently in several of the epilepsy centres, 80% of our patients have been getting that phone call within 10 days, which is amazing.

With these ‘triage calls’ the patient gets to talk to a professional, usually one of our specialist nurses. For example, the nurse could find the patient is someone who has had epilepsy for years, who might say “this happens to me occasionally, I just forgot to take my meds”. That person doesn’t need to go into the system immediately. If we feel that they’ve got enough information to keep going, we would usually see that person within two to three months, having reassured them.

However, they could call another patient who says “I don’t know what this is and since I’ve been discharged, I’ve had two more seizures”. We have the facility to get that patient in immediately, which is often the next day.

That, to me, is patient-centred care and it comes from the patients themselves designing it.

One of FutureNeuro’s success stories is the Lighthouse Project. How valuable is information gathered through projects like this that don’t link to a particular study?

The Lighthouse Project was funded through the chief information officer’s office in the HSE and led by researchers who now work in FutureNeuro. The goal of this project was to link advanced research and genomics to the electronic health records of patients that clinicians use daily.

When we found a gene that was causative for a person with epilepsy, the information became part of our electronic health record and was available to a clinician with information and links so that the clinician can have a conversation with the patient about what this means for their care.

Patient portals are not new, the main difference between this one and others around the world that it is a co-designed project. The patients themselves were involved in the design, what it should ask, and what it should say and the kind of information a patient should have access to.

In this era of data privacy we’re only doing what we said we would do within Lighthouse, we explicitly consented patients to do certain things with their data, but we are moving to a place now where we think the portal might be more widely used as a clinical tool.

One of the interesting projects we’re looking at is using a wearable monitoring device to automatically send information would be available to you and your doctor and you could say “I’m having less seizures than I did because I’m monitoring”, or maybe you’re having more that you didn’t know about, and your treatment plan could be amended accordingly.

We’re limiting our portal projects to things we explicitly have consent for. Privacy of health data is front and centre since GDPR regulations came in it has become clear to me that patients themselves don’t necessarily want to know in detail what happens to their data every step of the way. I would essentially have to become an expert in cloud computing as that’s the expertise you need and patients don’t need you to be an expert in this, they want to say, I trust you to do that right. They’re not letting you off the hook, they’re not saying do what you like, we don’t care. They’re saying, I’m not going to read through every step of this nine-page data process thing you’ve given me.

What you see is that everyone automatically agrees to it, its the same as online when you scroll to the end and click agree and it’s the same with some of our studies that we’re doing, they’re just flicking through and signing.

In doing that, they’re saying something very important: that they trust you to get it right and they’re going to come down like a ton of bricks if something happens. If I find out that someone has a laptop with my data on it that you’ve lost and someone is able to access it and it’s not encrypted and all those things, you’ll be in trouble with me. I’m not going to monitor every single step, I’m trusting it will be handled right. That’s a really interesting area.

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