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How smart are your patients? Can you help them to be smarter?

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By Katrina Delargy of TIYGA Health

No, I don’t necessarily mean how intelligent are they – nor even if they have so-called SMART goals (Specific Measurable Agreed Realistic Timebound goals). But those are valid questions. If we talk about health outcomes and healthcare in 2021, these are relevant questions. We talk about empowered patients, although some prefer to talk about activated or autonomous patients – does this depend on how smart they are?

Smart can be defined as “in a clever and effective way” (Cambridge), but it can also mean automated and operating as if by human intelligence (Collins) and smart is often interpreted as “automated”. Indeed, this is likely to be a trend but is not to happen widely in 2021 as healthcare is famously cautious in adopting big changes. We will have apps and devices that tell us we are becoming ill before we notice anything different, but that is easier said than done reliably at scale and pace.

Maybe in Spring 2021 I should ask if they are proactive, reactive or inactive in managing their health status and outcomes. Do they take steps to maintain the best possible health without being told what to do – or do they only do the right thing when left with little choice – or do they actually do nothing and just let things take their course? To some extent this depends on health, personal priorities and motivation. Do they reflect on their changing health and habits, do they take notice or be curious and keep learning, are they connected to others who care about them?

Another way of looking at this is to ask the question and focus on the role of money rather than suggest education and health literacy are the most important. For those who have money, maybe a smart patient is one who enjoys having wearable health technology or who has the right health insurance – a connected digital patient who allows technology to record data and analyse or share it.

Yet even those without a lot of money or access to wearable health technology can still be smart enough to listen to good advice, to be vigilant for changes in their mind and body and take action or seek professional advice. By learning to understand their body, they will be able to explain these observations clearly enough to healthcare professionals in a way that enables timely and proportionate interventions thereby preventing the worst outcomes. People don’t have to own technology to be smart, but it can help and is not always prohibitively expensive.

Making smart choices

If we consider the question in terms of making a “smart move”, then we must recognise that we usually apply this term after we know the outcome and if the decision was a wise one when we see how things turned out. Smart patients make smart decisions and wise choices. The wise choices may have been encouraged by public health campaigns, by example from others in their circle of interest or as a consequence of observations, hopes or fears. The important thing is to make such smart decisions at the right time, maybe based on limited information about their specific risks, but decisions they will not regret and were glad they were made.

Smart decisions are often based on instincts and intuition rather than definitive data; what makes them smart is that the outcome is better than it could or would have been. That is a pretty good fit for many health self-management decisions as the consequences of waiting for certainty are often regrettable. For example, a person who recognises they and their family are overweight may reflect the significance of this when chronic disease strikes. They may thus commit to a weight reduction programme. Similarly, if someone is very observant they may notice earlier stages of deterioration in memory and might go to a memory clinic early enough to get the right advice to delay more serious problems later. Do they keep a diary or record their observations?

Smart patients feel more in control, they feel empowered and autonomous and are less likely to allow risk factors to dominate their thinking. They understand what they can exert influence over and what they must accept; they distinguish between cause and effect and can see the sequence of events. People often try to act pre-emptively before an episodic illness crash or flare-up and plan mitigation measures. They recognise the importance of time and timing, managing their choices and behaviours in a time-sensitive way. Smart patients take medications and do exercises as advised, making the best choices available to them and plan their activities accordingly.

One day, artificial intelligence will enable more people to make such smart choices – everyone will be able to learn from others around the world, without ever having to meet them or even know whose data has contributed to the knowledge base. Right now, our challenge is to build this knowledge base in a digital form that can be analysed by machine learning. We have to learn from many people’s smart everyday choices, not just the peer-reviewed literature.

Sometimes the smart patients are the ones who monitor their health in more detail than others; maybe having a greater awareness of early signs of change – when there is “externally” no visible sign of anything being wrong. They know their “normal for me” baseline and spot any departure from this – possibly being labelled as “worried well” and fear being considered as wasting the doctor’s time; but they also do not want to regret not saying something early enough to have more choices . They collect their own data and present charts and diaries but if the busy doctor was not trained to interpret such individualised data, especially from non-medical devices – perhaps they’ll disregard such data. Could this be a missed opportunity for timely interventions?

Using a smart diary

Smart decisions are probably the opposite to taking a head in the sand approach, denying what is happening and ignoring the obvious signs and hoping their worst fears will not come true. Smart patients are observant and aware of changes in themselves – they see patterns, they don’t panic or hide but check to see if the patterns are really there and if there is a trend. Maybe they use a smart diary app (such as from TIYGA™Health) rather than a wearable or to give context to wearable data? They might quietly, or otherwise, make some small changes to their behaviour or keep their own private diary record to see if this is “something that needs attention” or “nothing to worry about”; they take their systematic observations to a professional for advice – and listen and take timely action. Many illnesses don’t usually just appear overnight although viral infections (e.g. covid-19 or long covid) might take people by surprise. Usually the signs are often there for some time in advance – but it is the smart patients who observe those signs and request early investigation. The smart patients give themselves and their healthcare professionals more options to achieving the best outcomes.

In 2021, smart patients accept vaccines as soon as possible and undergo testing if they have been near anyone with covid-19 or have any symptoms that may be indicative they have the disease. They know if they are vulnerable to infection, are extra vigilant where they go and how they protect themselves. They cannot change their medical history, age or ethnicity, but they can, for example, lose weight and eat a healthier diet to protect their immune system.

Being a smart patient does not necessarily mean having a lot of money or a high education but it does require recognising and learning to see patterns early and making timely observations. This allows wise decisions, guided by those who have access to the right knowledge, tools and devices. Time is your greatest asset is true for both patients and healthcare professionals. Timely care is smart care. Let us prioritise smart outcomes for the majority of our population.

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“I wouldn’t wish it on anyone, but I’m glad my brain tumour happened in a way”

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Helen and Megan have both experienced cancer in different forms

After Helen Bulbeck’s daughter Megan was diagnosed with a brain tumour, the whole family was left isolated with little to no support. Now she is using this experience, plus her own journey with cancer, to help run the UK’s leading brain tumour support charity Brainstrust.

“It was at the time when Rohypnol was doing the rounds in the local pub, so I just thought maybe her drink had been spiked.”

This was Helen Bulbeck’s initial reaction to her daughter, Megan, collapsing after a night out and being omitted to A&E in 2006.

She later realised that it was the start of a lengthy battle, as MRI scans revealed Megan had a brain tumour.

To complicate matters, surgeons opted not to operate unless the tumour showed signs of developing.

And so began Megan’s monthly brain scans, all while she was completing a History of Art degree.

“University was where Megan’s priorities were,” Helen tells NR Times. “The main focus at that point was to get her epileptic episodes under control.

“We weren’t referred to a neurosurgeon until the following January – that’s six months after her first episode.

“We were completely out of our depth; we had no idea what was going on. We had been told in October that she had a brain tumour, but that was it.”

It was the lack of available support that really concerned and surprised Helen.

“There was nothing,” she says, when asked about the help they received after Megan’s diagnosis. “We were just left in a vacuum.

“That’s what I couldn’t understand, because if you’re diagnosed with breast cancer, you’re assigned a clinical nurse specialist. We didn’t have that.

“I spent a long time on the internet trying to find where the support and information was and I desperately needed to talk to somebody about the impact that this diagnosis had, but there was nobody.”

Helen was left on her own in search of a solution for Megan, spending countless hours learning more about brain tumours and possible treatments.

This led her to discover neurosurgeon Peter Black from Boston, who agreed to operate on the tumour after a consultation.

The severity of brain tumours is graded from one to four. Black was the first surgeon to tell Megan she had a grade two tumour, but it could transform into a higher grade within five years, with the consequences being potentially fatal.

With that in mind Megan decided she would have the tumour removed. Because of the risks involved with the surgery, however, the procedure was delayed until after she had finished her studies.

Through all this Helen was fighting her own battle after being told she had head and neck cancer.

She quickly underwent radiotherapy and surgery, knowing she needed to stay strong for her daughter.

“I was just focused on getting fit so that I could go with Meg to America for the surgery.”

Helen was able to make a full recovery, but then faced the challenge of funding Megan’s £30,000 surgery.

Megan’s group of friends were desperate to help and agreed to do some fundraising, eventually smashing their target and generating £70,000.

After this, things finally started to run smoothly. Megan was able to finish her degree and successfully underwent surgery in 2007 which saw her tumour removed.

“We had such a good story and we’d learned so much,” Helen says. “We thought we’ve got one of two options; we can either go back to our lives as they were and donate what we’ve got left to another charity. Or we can use those funds to set up a charity which was going to close the gap in the marketplace.

“Who do you turn to the day you’re told you have a brain tumour? There’s nobody out there and we didn’t want people to feel as lost as we did.”

From this Brainstrust was born.

Starting off simply as a helpline, the charity has evolved into a support trust with UK-wide reach, developing communities to reduce isolation, build resilience and enable people to live the life they want.

It focuses on providing evidence based information around brain tumours and its support specialists can point people to the correct resources, without forcing anything upon them.

“The only other charities that existed at that time were all to do with lab-based research, there was no charity out there where you could pick up the phone and ask for help.

“Because we have that experience, we knew what the information was that people would want to hear.

“Meg and I knew what it meant to be both a patient and a caregiver, so we used that 360 degree perspective to support others.”

Since then Brainstrust has gone on to support thousands of patients and their families.

The vast majority (93 per cent) of those that contacted the charity reported a positive outcome, with nearly 1,000 new patients engaging with it in 2019.

Since its founding in 2006, care around brain tumours has drastically improved.

It is the most common form of cancer that affects those under 40 and it is one that is rising at the fastest rate in over 65s.

Discussing how attitudes to brain tumours have changed, Helen says that new technologies can lead the way to better outcomes.

“Your first line treatment with a brain tumour should always be, where possible, neurosurgery. That was what saved our daughter’s life.

“I think the technology is absolutely key and probably until the last five years, that’s been hugely ignored, but it is catching up.

“In terms of the actual therapies, I think with radiotherapy we’ve made huge advances.”

Despite this progress, Helen says there are still huge differences between the treatment of brain tumour patients and those with other cancers and conditions.

She draws on the example of post-stroke rehab and the general care stroke survivors receive.

“Stroke patients get a wonderful wraparound reablement service and I’d love to see brain cancer having a parity.

“I find that some of the attitudes are a bit nihilistic, as in if you’re diagnosed with a glioblastoma people tend to see this as life limiting with a poor prognosis so it’s not worth investing in. I think it absolutely is.

“That’s the one thing I would love to be able to transform, the day somebody has a brain tumour,
they immediately get that same wraparound care.”

Megan is currently living a happy and healthy life since her surgery, being able to get married and gifting Helen with two granddaughters.

She still undergoes regular brain scans and, after becoming a qualified coach with Brainstrust, she is now training to become a psychodynamic psychotherapist (a discipline involving the interpretation of mental and emotional processes rather than focusing on behaviour).

Reflecting on her journey Helen describes her pride in the work they had done so far, but admits there is still much work to be done.

“It’s been a highly emotional rollercoaster at times, we get very tired but it’s not a job it’s a vocation.

“It’s important not to forget that before we’re patients, we’re people and I think the more we can get clinicians to recognise that sitting in front of them is a person not a patient, then that person is going to be much more resilient.

“Just hearing the testimonials of the impact that our work has had is what keeps us going.

“I will always remember Meg saying to me ‘I would never wish a brain tumour on anybody, but in a way I’m glad this has happened because of what we’ve achieved.’”

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Loneliness in lockdown – how have survivors been impacted?

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Loneliness in lockdown among brain injury survivors is the subject of a new research study which hopes to shine a light on the ongoing issue of isolation. 

While loneliness for the wider population was something rarely previously experienced prior to the COVID-19 pandemic, for those living with a brain injury, the everyday reality is often very different. 

And through this new study, researchers hope to discover the true effect the pandemic and its necessity for survivors to stay at home – and in some instances shield for several months – has had and how their protective factors have impacted on that. 

The project, by the University of Sunderland in conjunction with Headway, is currently gathering participants for its pioneering research, which will compare the experiences of people living with brain injury to those without. 

Led by Dr Stephen Dunne, who has a long-standing research interest in social factors which affect brain injury and stroke survivors, he hopes it will both raise awareness of the ongoing issue of loneliness many people face, as well as helping to inspire action.  

“There is a dual focus to this project – loneliness is something known to the masses now more than ever before; it’s not just something felt by a particular part of the population. For a neurotypical individual, I think it has shown what life can be like to be lonely in ways they may never have known previously. 

“An important point of our research is to try and understand how, for people with brain injury, their loneliness and their perceptions of loneliness have been affected during the pandemic – has this been heightened over the past year and been exacerbated by lockdown? 

“Or have they actually felt less lonely than neurotypical individuals, as they have had the experience pre-pandemic of adapting to life like this, and already have the support strategies in place?

“But crucially, the future of this project isn’t to define loneliness, understand its impact, then drop it – we want to understand it so that we can facilitate the removal of barriers so we can bring about strategic improvements to the wellbeing of people living with brain injury.” 

Dr Dunne and his team are seeking brain injury survivors nationally to take part in the research, which will be done by a survey: https://sunduni.eu.qualtrics.com/jfe/form/SV_czH5B8R5kieDgQR and an optional additional interview with the team remotely via Microsoft Teams. 

“We’re at a crucial stage now where we appear to be coming out of restrictions, but the experiences of the past year are still very real for so many people,” adds Dr Dunne. 

“We want to do this at the right time, before reintegration into society starts to happen and we are looking retrospectively, so we’re keen to hear the experiences of as many people as possible.

“We want to better understand loneliness and its impact, so we can help to bring about change for the future. Understanding the journey of brain injury survivors over the past year is a key part of us being able to do that.” 

For further information about the research study, or to share experiences through an interview with the research team, contact Stephen.Dunne@sunderland.ac.uk

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Temporary concussion substitutes ‘must be introduced by June 1’

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Temporary concussion substitutes must be included in the current trials underway in the Premier League to safeguard the safety of players, players’ unions said today. 

FIFPRO and the PFA have called for the introduction of temporary substitutes no later than June 1, and for the scope of the 18-month trial – which enables a team to replace a player who has sustained concussion, but on a permanent basis – be extended to include parallel trials for temporary substitutions. 

In an open letter to IFAB, football’s lawmakers, FIFPRO – which represents over 65,000 professional footballers worldwide – and the PFA highlighted the cases of West Ham United’s Issa Diop and Sheffield United’s George Baldock in making their case. 

“Player safety and welfare is paramount, and should be the only priority,” they say in their letter. 

While both bodies were supportive of the permanent concussion trials when introduced, such incidents – added to the new FIFPRO poll, which shows 83 per cent of 96 professional football club doctors at top-flight European club believe temporary substitutes should form part of future protocol – have shown that action needs to be taken. 

“In England, since the trial began, we are aware of two incidents where a temporary substitution option would have better protected players,” states the letter. 

“In each case, the players suffered from a head injury but, following an initial on-field assessment, continued to play. They were subsequently removed when it emerged their head injury was worse than first thought.

“These cases underline our concern that permanent substitutions do not give medical teams the appropriate environment to assess a player with a potentially serious head injury.

“The reality of the in-game situation is loaded with pressure. Medical teams can be presented with a situation where a globally broadcast match is on hold, awaiting their assessment. They have to make a potentially game-altering decision in a multi-billion-pound industry.

“We have no doubt medical teams act in the sole interests of the players. However, the rules do not do enough to support medical personnel. Pressure on them will be amplified with the return of crowds.”

The letter states that the inclusion of temporary concussion substitutions, which they propose should be tested in parallel with the current trial, will:

  • Provide medical teams with additional assessment time
  • Allow for the assessment to take place in an appropriate environment
  • Permit a match to restart with neither side numerically disadvantaged
  • Reduce pressure on players and medical staff to make quick decisions.

“In December 2020, we welcomed the decision by IFAB to invite competitions to trial permanent concussion substitutions,” FIFPRO and the PFA state.

“At the same time, we have remained in favour of testing temporary concussion substitutions. This has been our position for many years.

“Since the beginning of IFAB’s permanent concussion substitute trial, we have seen several incidents where the new laws of the game have fallen short of their objective and jeopardised player health and safety.”

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