The patient activates himself! More involvement, better outcomes. Back to the Future, 1985

Activating the patient: more involvement, better outcomes

An interview with Dr. Lia Ali by Thomas Clark

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An interview with Lia Ali

An interview by Thomas Clark

In the popular imagination, the phrase ‘innovative healthcare’ conjures up wearables and the quantified self movement, genetic mapping, customized medicines and the bionic man. But how can these advances actually be harnessed to make people's lives better at a time of tightening resources? What are the paradigm shifts that must take place in healthcare and outside it in order to create better outcomes? What will the new relationship between health professionals and patients look like in thirty years’ time? Dr. Lia Ali gives her opinion, explaining why the most important medical resource of all is not the new technology, but the person it’s designed for.

Dr. Lia Ali is the clinical lead for Myhealthlocker, a digital service that allows people to have control over their health information and manage their own health and well-being. The platform leads the way: it has been implemented for patients at the South London & Maudsley NHS Foundation Trust in South London. Dr. Lia Ali is a practicing psychiatrist at the Trust with particular clinical interests in psychiatry at the mental health/physical health interface.
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In thirty years’ time how will the health landscape look?

There are a number of things. If we look at other sectors there has been a revolution in the way that we use technology as part of our everyday lives. For example, the banks have put a great deal into changing the way people interact and do their financial transactions from the customer level. We’re starting to see how those things might be useful in health, but also where the problems might be. A lot of the resistance is around the fact that if you’re doing your online shopping, or paying a bill online, it has a completely different emotional tone to doing something like a health transaction. In thirty years’ time I think the landscape’s going to be completely different. There will be a lot more interactions that are happening solely online, you can look at initiatives like Big White Wall that are starting to do this with their online peer-​support platform. It provides psychological services exclusively in the virtual world which are backed up further down the line by face-​to-​face services. We’ll see more things like that coming through.

Big White Wall is about peer-​support from the world wide web. It’s essentially remote. Do you think it is a good long-​term solution? Can it really replace speaking to people around you – not only your GP, but also the family and society around you that care?

No. Something like Big White Wall is never going to replace the interaction with your family or your GP. But it does provide an opportunity for a part of the population who might be isolated, who are experiencing severe psychological distress, to connect and access psychological therapies in a way that wasn’t previously possible. We know that mental health disorders are common – one in four people have some experience of a mental illness, and yet the majority of those people don’t get anywhere near any kind of mental health service. I like to think of the World Health Organization Mind the Gap project, about increasing the level and access to mental health care globally, where people who are not mental-​health trained administer essentially mental health interventions. It looks mainly at the developing world where there is one psychiatrist for an area the size of Wales. But access is an issue in the UK, too. The project is essentially a set of algorithms, developed over time, for how to diagnose things like depression; I think it shows that when you’ve got algorithms that are well worked-​out, it doesn’t replace the diagnostic skills that you might get from a fully trained psychiatrist or a psychiatric nurse, but it does go some way to addressing the diagnostic needs of that patient group who aren’t getting access to anything.

About time to change the doctor–patient paradigm? Ancient Greek vase showing a patient visiting the physician to be treated. Source: Wikipedia Commons

About time to change the doctor – patient paradigm? Ancient Greek vase showing a patient visiting the physician to be treated. Source: Wikipedia Commons

There is something very important about human contact for our well-​being

You compared health to other industries which have implemented technology. But in those industries, when a machine can do something – not necessarily better, but when it simply can do something – then the human tends to get replaced. How do we fight the danger of replacing the human everywhere?

I think that most people would say that human contact is one of the key things for their well-​being. That human contact doesn’t necessarily have to come from a face-​to-​face interaction. There are examples of work where people say they feel connected in other ways – by being engaged in a social-​media mediated carers’ group, for example. But we can’t fully replace human contact with technology. These are themes that came out of the Francis report in the UK, the big scandal in Mid-​Staffs, in the North of England. A big reason for those failings was the culture that was set up, whereby these people were dehumanised and just became pieces to be moved about in a sort of healthcare game. I would resist any attempt to use technology in a way that makes that dehumanisation happen more, and if we listen to the lessons from the Francis report, if we listen to patients’ experiences, then I think we can avoid that.

You’ve been working within the UK National Health Service (NHS) to develop and implement the Myhealthlocker patient platform, which is a way for people to share information and talk with health professionals on a more regular basis. What is the thinking behind this?

I’ll start with your statement that Myhealthlocker is a way of talking to health professionals. We are trying to build it as a system with a slightly bigger vision than that. It comes back to trying to get patients activated and at the centre of their care. We know that if people really feel involved in their own healthcare and their own well-​being, the outcomes for them are much better. In something like diabetes, for example, we’re beginning to recognise the fact that somebody has to engage with having their blood sugar monitored, they have to engage with going to the doctor and picking up their medications, they have to engage with looking at their diet, in order to achieve good clinical outcomes, to be healthier and to live the way they want to. If we don’t recognise that and we continue with a very paternalistic way of treating people – if people are very passive in their care, we will never achieve anywhere near the kind of outcomes that we can with the collaborative approach. This involves a significant shift in the way that we think about the interaction between clinician and patient; we need to make sure that the system is built recognizing and facilitating that. 

People can achieve better mental health outcomes by labelling and recording their own symptoms and triggers. Image source: Wikipedia commons.

People can achieve better mental health outcomes by labelling and recording their own symptoms and triggers. Image source: Wikipedia commons.

What is the potential for a thing like Myhealthlocker specifically for people with mental illnesses?

Again, it comes back to values and surfacing what’s important to people. For example, I might have in the clinic someone who has depression. They don’t necessarily know they’re depressed, but they are able to tell me what functions they can’t do. They can’t get to the school on time to pick their children up, they can’t sequence their thoughts well enough to put in a job application. They’re describing depression, just not in the biological terms I might read in my textbook. So the opportunity in something like Myhealthlocker is that it allows people to do things like build surveys for things that they think are important. As the doctor I don’t build it. It’s finding and defining the measures that are important to people, and giving them the power to do that and also to put it in the context of their wider healthcare. The visualisation is really important here – people need to see it in a way that has value for them and captures their imagination.

People with severe mental health issues die about twenty years earlier than the average member of the population

The other area where mental health patients can benefit from a digital system like Myhealthlocker is in the realm of looking after their physical health. Traditionally we’ve had a real problem with the split between physical and mental health issues, so much so, that people with severe mental health issues die about twenty years earlier than the average member of the population. One of the things we focus on in Myhealthlocker is making sure that we are looking at some of these physical health parameters: the ability to monitor blood pressure, for example, or heart rate or weight and putting that, again, in the context of your wider health issues. There are some other great projects that are doing this too, such as the IMPARTS project at King’s Health Partners.

How do you see the role of health professionals changing in the future?

The whole communication part will change. We’ll end up doing, probably, more consultations virtually. I hope that we will start to recognise the importance of the information that the patients, and the patients’ carers bring to us, and that will form a much bigger part – for me it needs to be the central part – of any care plan, or of any data repository that we’re using to treat people. Once we make this shift to a more collaborative approach, then a key role for doctors will be this concept of ‘data sense maker’; they’ll have to be more adept at interpreting and utilising the increasing volume of data coming to and from patients. One thing is certain though: we’ll always need the clinicians with the deeper knowledge, they won’t disappear.

What about training for medical professionals?

I hope there’s going to be much more focus on how you use the data available to you in your everyday practice. I can remember being a Year One new doctor (house officer) and walking around with one particular book in my pocket the whole time – that’s how you identified who the new doctor was. If something wasn’t in that book, then I might miss the piece of information that I needed at that particular point in time, at that particular point of care. Now we can access a much bigger range of data, because we’re standing on the ward with our smart phone, able to look up the British Thoracic Society guidelines on managing exacerbation of a particular condition, for example.

The internet community supports services like Big White Wall that bring people solace.

The internet community supports services like Big White Wall that bring people solace. Can they compensate for loneliness and diminishing human contact in other walks of life?

How do we manage the risks of new health technologies?

I don’t have the answer to that. I don’t know that anybody has the answer to that yet – how you set a balance between safety and what is actually going to be used, and be useful to people. You don’t want to shut down innovation; at the same time we don’t necessarily want to expose people to something that is going to cause them harm. Maybe we have to accept that things that we put out there are going to have more risks to them, and we might be really uncomfortable with that, but we have to be a bit more transparent about it to make it acceptable to do. We have to streamline and speed up the way we do evaluation of these kinds of health tech. I think that it is quite important to realize that in health we don’t have all the answers, that we fail sometimes, and that that’s part of trying to grow our ability to give people good healthcare.

Is there a case for computer programmers as doctors? Do we need to get the technology development closer to the medical profession?

The technology absolutely needs to be embedded. If it’s too separated off from the clinical front line, you end up – as we had before – with technologies that might do something whizzy for a year but soon get outdated and never truly address the way our clinical work flows operate. Although the focus is on the experience of the patient, you have to factor in how you engage the clinical workforce in implementing these technologies. You need to have the clinical perspective on how the technology can be used; my role at Myhealthlocker is to provide that, in fact. It’s going to be fascinating and exciting to see what happens when we have people coming through medical school who have been trained from the start to give that feedback.

In mental health there are some real, tangible risks around sharing information, but they are actually rare cases

Do you think that healthcare innovation will happen more quickly in the developing world and that we will see their quality of healthcare surpassing the countries with more firmly established healthcare systems?

That’s an interesting and bold statement Tom! But yes, potentially. Any innovation is driven by need. So if you’ve got populations that have huge health inequalities, but growing access to certain types of technology – smart phones and 2 and 3G connectivity being one of the big things that is done better in certain parts of the developing world, then we may see some great advances there. Definitely.

Wearables and other tools are allowing people to match different kinds of health data for surprising insights

Wearables and other tools are allowing people to match different kinds of health data for surprising insights

What’s your whacky vision for the future of healthcare? What are people going to have attached to their heads, and so on?

I think one thing that will definitely happen is we’ll have much more matching together of data. There’s an amazing, really fun lady that I know called Anne Wright who developed something called Bodytrack with Fluxstream, and she walks around with a home-​made utility belt made out of plaid with all the wearables on it. She’s part of the Quantified Self movement and she tracks a whole range of things about herself, everything from heartbeat, to what she eats, to how connected she is. So we will see people putting together data a lot more and drawing insights from that. Really interestingly, people will start combining that with genomic data. Anne Wright managed to get a copy of some of her own genomic data and was able to figure out that she had a particular gene variant that meant she had a paradoxical reaction to a particular blood-​pressure drug or something similar. She therefore got a symptom that nobody else gets, and it was all to do with a particular gene variant. Those kind of miniscule insights that you would never get unless you were engaged in the most expensive research study will become much more accessible. It’s not ‘whacky’, but that’s my hopeful vision for the future.

Will privacy concerns stop the benefits that can come from sharing this information?

Yes, we’re already seeing elements of that. In mental health for example, it is true that there are some real, tangible risks around sharing information, but they are actually rare cases: only a small amount of data in the mental health field carries this risk. It would be a huge shame to let this sort of concern stop the huge advances that could be made by sharing data properly and by people being as open as they can with that data. My biggest concern is actually what insurance companies will do with this sort of stuff. It’s going to pose a number of quite tricky questions for us as a society when health insurers start saying ‘well, we can see that you’ve put on five pounds in the last six months, we’re raising your premium.’ Those are going to be the kind of barriers for people making the most of these digital technologies.