Psychology in digital health: It’s the missing piece of the jigsaw…

Guest blog by Jessica Auton from Aseptika Ltd (Activ8rlives), winners of  the ‘Manage My Condition’ Category in this year’s AXA PPP ‘Health Tech & You’ Awards

The psychology of self-management and the impact of digital technology:

Screen Shot 2015-05-26 at 23.51.25With the shift towards self-monitoring utilising digital healthcare, the public, with no clinical training, can track and aggregate their health, diet and activity data, set goals and healthy targets, visualise and learn from their data (e.g. weight, activity, nutrition, blood pressure and respiratory health) and monitor their progress in the form of charts and dashboards.

Bringing about individual behavioural change success is influenced by 3 important elements: readiness to change; barriers to change; and expected relapse. You cannot force an individual to make behavioural changes without considering these 3 factors. In the preparatory stages of behavioural changes learning from an individual’s baseline behaviours and data is important to set realistic goals and targets.  Once goals have been set, behaviour change activities with small achievable steps can be incorporated within daily routines. Mindfulness techniques come into play with recording, review, learning and providing an opportunity for accountability to this process.

Education and knowledge throughout the change process is very important, with notification of accurate science/clinical based information and the understanding of what constitutes healthy behaviours. A common technique used is groups, self-help, or social networking groups who share similar goals, providing group dynamics of reinforcement and encouragement.

Taking action towards an achievable goal, needs celebration and reward for positive steps taken, and this in turn reinforces and supports positive steps towards change. In the same way gamification of the digital experience encourages greater engagement and provides feedback and celebration of achievements. Time to periodically review motivations, resources, and progress to healthier behaviours and renew commitments and belief in abilities is key. Avoiding former negative behaviours and temptations by replacing with healthier habits is key to forming lifelong changes.  Knowing that we might fail along the way is part of the process and that’s okay. This is a common stumbling block for many but to reassure them to take it each day as it comes.

Users can receive instructions, nudges and prompts for behaviour change based on “expert learning” from the automated analysis of their data. This is personalised feedback in real-time based on an individual’s health behaviours, used as an assist to make changes in behaviour, reminders for medication, warnings about lack of adherence and alerts of declining health to the user or if the user is incapable of responding, to their carers and supporters. These steps to behaviour change provide individuals with the ability and confidence to know when and how to self-manage themselves. It also provides guidance parameters under which they need to seek medical intervention and when to use other services, such as community pharmacy or carers/family members.

Our thinking: 

Key to maintaining health is adherence to care plans and medication schedule  that we agree with our  own clinical team for self-management. Digital interventions can be assists to keep track of how well we are doing and report what is happening when we go off plan, or when our health suddenly deteriorates.

Patient education and training in self-management represents a significant opportunity. Empowering patients who have diagnosed conditions, which are incurable, so that they can take better care of themselves, particularly by initiating treatment at the outset, represents an opportunity to make a step change. But healthcare providers lack the practical tools and the communications infrastructure to turn this philosophy into clear actions that patients/carers can understand and use.

Self-management means moving from reactive admissions to partnership with patients/carers in which they become expert in their disease. For NHS Trusts already innovating in this arena, digital solutions can provide support of locally driven initiatives. Digital tools can be used, promoted and implemented by any healthcare provider and range from “wellbeing assists” through to an IVD tests. When they are used together, they form a comprehensive solution for the self-management of long-term health and co-morbidities, providing information to all stakeholders. This is not telemedicine – there is no continuous remote monitoring – so the patient/carer/family undertake this unpaid role directly and must do so to benefit from the information provided (empowerment). This prevents the transfer of savings from paying clinicians for face-to-face time to then be spent paying for a call centre staffed by clinicians.

Our own platform  has been designed to support laypeople, carers/family members and their healthcare team bring about lasting positive healthy behaviour change, adherence to care plans and medication regimes, self-management of long-term health conditions through self-monitoring of health parameters and a significant increase in engagement of patient centred healthcare.

Our solutions are designed so that the patient becomes responsible for their self-generated data and makes it accessible (if and when they decide to), to their clinical team. This also transfers responsibility for the cost of managing and securing these data to the patient and away from the NHS because these data are owned by the patient.

By self-monitoring with several simple gadgets  our platform  can stop small problems turning into a situation that requires emergency care in hospital.

The system is ideally suited for those with long-term conditions such as: Asthma, Chronic Obstructive Pulmonary Disease (COPD or emphysema) and Cystic Fibrosis (CF). Stimuli that increase long-term engagement in using our Cloud-connecting health tracking devices (Activity tracker, Smart Scales, Peak Flow meter, Pulse Oximeter, Blood Pressure monitor and Food Diary) and uploading to the Cloud so that patterns can be seen, will in turn, increase the efficacy of treatment processes – we become more focused on the management of our health.

We include a social media element (self-help groups), social networking, rewards and gamification to encourage self-monitoring as the cornerstone of a self-management strategy.

Screen Shot 2015-05-26 at 23.44.12Our platform has a rounded approach to self-management utilising  the technology available to us today, but apply it with an eye to the future, enabling those to whom healthcare matters most the individual, to take control of their lives.

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Weighing up the pros and cons of EU-funded research in stroke

GRGuest blog by Gary Randall, European Research Manager at the Stroke Association 

Horizon 2020 (H2020) is now up and running, and has funded its first new acute stroke project, PRECIOUS . The EU funding regulations enforce a multi-country, multi-culture approach across a large consortium and this is clearly beneficial for promoting the take up of best practice and the move to standardised and effective procedures. In addition, the gains in research dissemination and researcher networking afforded by EU collaborations are significant. But what happens when these cultural benefits come up against what is best for science, or stroke patients themselves?

Recently at the first ever ESO conference, Professor Werner Hacke, the top-rated stroke researcher worldwide, gave a thought-provoking talk. At issue were the reasons why large trials often fail and the key ingredients of trials that do succeed. Hacke’s account was that large trials that fail are often industry sponsored; they combine regions that differ in medical systems, reimbursement expectations, hospital infrastructures and trial investigator experience. He also added that; they include centres selected by CROs and not by the central trial steering committee; and that they are influenced too much by marketing, leading to broad inclusion criteria, long trials and optimistic treatment effects.

Hacke claimed that in comparison, the majority of successful trials were investigator driven and publically funded; they had protocols designed by the investigators and were led by a steering committee; they included a small number of centres often concentrated in fewer countries; they selected subsets of patients with high response rates and, overall, were small in patient numbers. When a trial does work, it is often revolutionary in its effect on survival rates and outcomes.

So how should we progress? Looking forward, as national research budgets come under pressure, the EU budget increase in H2020 will seem even more attractive and competition is likely to increase (as indeed it has over the first 18 months of H2020 compared to the previous framework). It is therefore even more important that the EU chooses the best proposals and does so via transparent evaluation methods of a high and reliable standard.

Unfortunately, the feedback from many academics is that with the success rates so low (often fewer than 5%), coupled with unwarranted comments in evaluation reports, there is a growing feeling that the benefits of funding are not worth the costs of writing new proposals.

This sentiment must be resisted. Not only are many of the successful traits from Hacke’s list intrinsic to EU funded work (e.g. public funding and investigator control), but recent work funded the  Stroke Association has shown that stroke research is hugely underfunded, relative to its impact on society. The need for increased engagement with Horizon 2020 is stronger than ever. Our dedicated staff and colleagues at Innovate UK  and the NHS European Office can advise and help with idea development, consortium formation and proposal submission.

The EU is flexible in its approach and willing to listen and learn from what has worked before in stroke research. We must give them every opportunity to do so by continuing to submit high-quality proposals. Funding world-class research into stroke is the only way we will help to conquer this devastating condition.

Action on Stroke Month is the Stroke Association’s annual awareness-raising month that takes place every May. This year, the charity is focusing on working-age stroke.

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Parents of children taking antipsychotic drugs require more support

Guest blog from a Clinical Nurse Specialist, CAMHS

The ‘Family Intensive Support Service’ is a team within the Child and Adolescent Mental Health Service, working with children and young people who have a moderate to severe learning disability, challenging behaviour and very often a mental health disorder such as anxiety or OCD.  Some of the children and young people these teams work with will have been prescribed Anti-psychotic medication. Anti-psychotic medication is a drug that can come with a lot of side effects such as weight gain, nausea and headaches and can also lower the threshold for seizure activity, and should be considered as a last resort when prescribing.

Auditing the use of Anti-psychotic medication in children and young people is an important part of the teams work.

A recent audit analysing over one years’ worth of data identified how many young people had been prescribed this type of medication, and, in the same time period how many had stopped taking the drug.

Some families who have taken the decision to use anti-psychotic medication to treat their children have never looked back and think of it as ‘getting back their child’. Others thought their children’s condition had deteriorated with medication and felt deflated when it had not worked.

Screen Shot 2015-05-14 at 09.25.59Those parents who do give their children the prescribed drugs, and see a difference are often reluctant to reduce the dose or stop the medication completely fearing their child’s condition will become challenging and unmanageable. Often parents have experienced physical and verbal aggression at the hands of their children and get very little help with managing this type of behaviour.

Our audit showed that out of the 30 children on the caseload between July 2013 and July 2014, only three stopped taking anti-psychotic medication, one was due to it not being effective and the two others were due to changes in environment leading to less challenging behaviour and no longer needing anti-psychotic medication.

When parents have to make the decision whether to medicate their children or indeed reduce/stop medication,  they are often faced with pressure from other outside agencies. School and social care agencies sometimes want to be able to ‘manage’ children whilst they are at school or respite. This often leaves parents with a dilemma, they may perceive that their child might be better off reducing or stopping medication but be frightened to take that step.  Parents need not only increased support in managing challenging behaviour but independent support and advice in being the final decision makers on  whether their child is medicated or not.

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Walking is the cheapest, simplest and one of the most effective forms of exercise!

Guest Blog from Living Streets

The benefits of walking as a form of exercise are often underrated. From helping improve your physical and mental wellbeing, building walking into your day also saves money and helps the environment.

This week national charity Living Streets is encouraging workers across the country to take to their feet and feel the benefits of walking for WScreen Shot 2015-05-12 at 12.50.05alk to Work Week.

From 11 to 15 May companies and individuals can join Walk to Work Week by making simple changes to their day such as walking instead of driving or taking public transport, planning a walking meeting or going for a lunchtime walk.

Incorporating walking into your daily commute can also mean getting off local transport a little earlier or parking your car a bit closer to home, rather than at work.

Walking is the cheapest, simplest and one of the most effective forms of exercise. Walking for just 20 minutes a day can transform fitness levels, improve health and reduce stress and anxiety. With many of us rushing from the commute to the office, and then eating lunch at our desks before heading home for a night in front of the television, we are unwittingly risking our health.

A brisk 20 minute walk can burn up to 110 calories so if combined with a healthy eating plan it’s an excellent way to lose a few pounds. It’s a weight bearing exercise so particularly valuable for women at risk of osteoporosis and so you’ll soon find an improvement in muscle tone and your posture.

The results of 2015 study found that a 20 minute walk each day could be enough to reduce an individual’s risk of early death (Ekelund et al. 2015)

There is a wealth of evidence which shows that physical activity can not only reduces stress and anxiety, but can be as effective as medication in boosting mood. Walking is a great way to clear your head at the beginning or end of a stressful day.

A few simple steps in the right direction can make all the difference. Who knows where walking can take you? Why not step up to the Walk to Work challenge and find out.

For more information or to sign up please visit www.walktoworkweek.org.uk

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‘Parity of esteem’ – a society free from stigma and discrimination

Guest Blog from the Mental Health Foundation

The Select Committee on Health’s enquiry into children and young people’s mental health and the launch of the NHS England Mental Health Task Force are welcome developments in a year that has seen the issue take centre stage.  It is vital that we achieve parity of esteem for mental  health with physical health.  At the moment, mental health problems account for 23% of the disease ‘burden’ but only receive 13% of NHS funding. We also need to apply this to preventative measures as well as services for those who have developed serious mental health problems.

We are working for an end to mental ill health and the inequalities that face people experiencing mental health problems.

We develop and run research and delivery programmes across the UK that have, for more than six decades, given us the evidence and expertise to know what works and how to intervene earlier. And, importantly strategies to prevent mental ill health and maintain good mental health. We use what we learn to help everyone by offering straightforward and clear information on every aspect of mental health.

Our advice also helps people help the people they care about too – in their families, their communities or their work. We influence policymakers and advocate for changes in services, using firm evidence and the voices of people with direct experience of the issues.

We are prepared to “speak truth to power” and to campaign on the issues that affect public mental health and wellbeing and the lives of people who have, or are close to someone with a learning disability. We aim to inspire the development of a society free from stigma and discrimination, where everyone can achieve their potential to flourish and thrive.

Expanding our role

We expanded our work as an information provider and campaigning organisation in the last decades of the 20th Century. We promote the idea that good mental health and wellbeing is for everyone and not just those experiencing problems.

We have continued to work at the forefront of mental health, often focusing on overlooked and under-researched areas such as personality disorders and mental health issues that affect black and minority ethnic people.

Our public mental health campaigns on topics such as exercise and depression, diet, smoking, alcohol and friendship have raised awareness of their contribution to mental health and helped to reduce the stigma associated with mental illness.

Mental Health Awareness Week

This year’s Mental Health Awareness Week 11-17 May,  focuses on mindfulness. Sometimes thought to be a fad or something for ‘hippies’  mindfulness is integrative, mind-body based training that enables people to change the way they think and feel about their experiences, especially stressful experiences. Mindfulness pays attention to thoughts, feelings and body sensations to become directly aware of them. Mindfulness is the ability to be in the present moment – it’s about observing our thoughts, but not getting caught up in them.

Screen Shot 2015-05-10 at 22.10.25Mindfulness Based Cognitive Therapy (MBCT) has a strong body of evidence which supports its effectiveness and is recommended by the National Institute for Health and Care Excellence (NICE) for the prevention of relapse in the ‘watchful waiting’ period i,e. for those that have been clinically depressed three or more times. More recently research by the Oxford Mindfulness Centre featured in the Lancet referenced proven trails where relapse was prevented through the practice of mindfulness.

There will be over 300 local supporter events happening throughout the UK in workplaces, homes, parks and schools during Mental Health Awareness Week.  For a free supporter kit, please contact publications@mentalhealth.org.uk.  To see our relaunched and refreshed online mindfulness course go to www.bemindful.co.uk from 11 May.

About the Mental Health Foundation

Screen Shot 2015-05-10 at 22.08.40The Mental Health Foundation is in its 65th year:  in 1949, Dr Derek Richter, a neurochemist with a particular interest in mental health, vented his frustration at the scarcity of funding for the field. “I am getting tired of this perpetual fight to get small sums for research,” he wrote, “when our colleagues working on cancer and TB are almost embarrassed by the money being thrust at them.” Richter, director of research at the Whitchurch hospital in Cardiff, had an idea to make a difference. “Obviously,” he declared, “there should be a Mental Health Research Fund.”

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Utopian dreams: the TPA object to evidence-based support for pregnant mums

In an ideal world, pregnant mothers wouldn’t smoke, we’d all walk to work and no one would eat junk food. On BBC Radio Kent this morning I put the rational, evidence based case for encouraging mums-to-be to quit smoking through the tried and tested scheme of giving vouchers for fresh fruit and vegetables for every week that they don’t smoke. It’s a win-win-win scenario: low cost – healthier mum – healthier baby. Started in Dundee over eight years ago as the ‘Give it up for Baby’ scheme, this smoking cessation support has been shown to be one of the most effective ways of encouraging mothers to quit.

However the Tax Payers Alliance (TPA) object, pouring scorn on mothers who should know better, saying we already spend loads on teenage mums and claiming this scheme is adding to our national debt.

Yet their argument for non-interference based on rising debt is idealistic economics; their repeated accusations of nannying contradicts their concern for prudent use of taxes; their claim that mothers should need no incentives to make good choices ignores reality.

Economically, the long-term costs to the nation of low birth-weight babies born to mums who smoke can be enormous. In addition to the extra post-natal support to help babies gain weight, the risks to the child include breathing problems, sleep apnea, heart problems, jaundice, chronic lung disorders and infections. Some go on to have long-term problems with hyperactivity, development and school achievement.

The extra cost of just one baby born prematurely due to the mother smoking could outweigh the entire-cost of offering a hundred mothers weekly £12.50 grocery vouchers for quitting. The TPA mean well, and it is right to ensure that we don’t rack up more debt. However our concern should be that taxes are spent in the most effective way possible, and whilst others can preach about their Utopian idyl, the rest of us should focus on the evidence, intelligent incentives and the best way to deliver a caring economy.

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Why the NHS becoming more Parkinson’s friendly can deliver a better person-centred experience

Guest blog by Laura Cockram, Policy and Campaigns Manager at Parkinson’s UK 

Laura Cockram March 2015127,000 people across the UK are living with Parkinson’s – a progressive, neurological condition with no cure. Around a third of people with Parkinson’s develop symptoms before 65, and one in 100 before 40.

Everyone with Parkinson’s is different but it usually affects movement with people experiencing rigidity, tremor, slowness of movement and sudden freezing. However people with the condition also experience as many as 40 non-movement related symptoms which can be just as debilitating, including anxiety, depression, fatigue, pain, continence issues, memory problems and sleep disturbance.

The NHS is a key election issue for every party in the race to No.10 and Parkinson’s UK urge the new government to follow these 4 steps to make the NHS more Parkinson’s friendly and deliver a better person-centred experience.

  1. 1. Person-centred care that’s co-ordinated: Every party talks about integrated or co-ordinated care and it’s widely recognised delivering this consistently is challenging. However, the Better Care Fund has started some of this work with health and social care commissioners pooling budgets to reduce emergency hospital admissions. The lesson the new government should learn is to ensure the voluntary sector is fully involved in planning these interventions for it to truly work.

RDXXX-Election-InfographicProviding person-centred joined-up care in the community helps people to stay well and out of hospital. A recent report found people with Parkinson’s are more likely to be admitted to hospital as an emergency. The cost to the NHS for people with Parkinson’s in England alone is nearly £200 million a year – £3,338 per patient, compared to £1,417 for a planned non-emergency hospital stay.

  1. 2. Listen to people affected: We regularly hear from people with Parkinson’s and their friends and families about how they can be ignored by professionals when in hospital, usually meaning they don’t get their medication on time, suffer a deterioration in their health and possibly stay in for extended periods.

With such a complex condition where symptoms fluctuate and medication regimes are complicated (some people with the condition have to take up to 30 tablets, maybe five or six times a day at very specific times) people with the condition and their carers are usually the experts in what works to control their Parkinson’s.

The NHS constitution outlines patients and carers rights, however people with Parkinson’s and their carers don’t always experience this when in hospital. This is why we’re supporting John’s campaign so carers, friends and families are able to stay with people with dementia in hospital. To be truly effective, this must be extended past dementia and to those with Parkinson’s and other complex long term conditions.

  1. 3. Add Parkinson’s to the list of exemptions for prescription charges: We estimate just over 7,000 people with Parkinson’s in England pay for their prescriptions. However, the cost for many can be prohibitive and there’s a lack of awareness of pre-payment certificates that can be used to reduce and spread the cost of medication. Also the list of exemptions for prescription charges was last reviewed in 1968, way before numerous medications for Parkinson’s were approved.
  1. 4. Access to the full range of treatments available: Providing people with the full range of treatments to control their symptoms would enable people with Parkinson’s to take control of their condition. We are eagerly awaiting the decision in July on whether NHS England will commission Duodopa – a treatment for people with the condition where all other oral medications have failed and surgery has been deemed inappropriate.

The treatment while costly is only suitable for a small cohort of patients and has been proven effective in controlling Parkinson’s symptoms and enabling people with the condition to regain their independence and even return to work.

As part of this year’s Parkinson’s Awareness Week (20-26 April), we’re calling on the new government to make the NHS more Parkinson’s friendly and deliver a better person-centred experience.

And we have staff across the UK poised to work with commissioners and professionals to advise where these improvements could be made.

To find out more about how you can support Parkinson’s Awareness Week, or our campaigns, visit www.parkinsons.org.uk

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