Have your say

We posted a series of challenging questions that aimed to generate radical new thinking about the best way to provide health and social care in the future. Our final question looked at the active patient and the role of technology and data in health and social care.

View previous questions on changing professional roles, improving the health of the nationre-thinking the location of care and the changing patient.

Comments

#40251 JASON MAUDE
CEO and Founder
Isabel Healthcare

The pivotal tool to empower patients is the symptom checker. This enables the patient to formulate a differential diagnosis together with the doctor rather than just depend on what they are told. It allows the patient to form their own judgement about their diagnosis and so ask their doctor better questions and be more confident in challenging them. A quick and correct diagnosis is the first and most important step getting treated appropriately and cost effectively. We recently released a patient version of our professional system and this is a highly sophisticated symptom checker which patients can access at no cost at symptomchecker.isabelhealthcare.com/home/default

#40263 Daniel Robinson
Development Researcher
Nominet Trust

One of the greatest differences that digital technology has made to many of our lives is the ability to access information. The internet specifically allows anyone with a PC or smartphone to access information that previously would have been near impossible to obtain without connections to a relevant expert. Information on almost any health issue or medical condition can be accessed immediately, discreetly, and to a level of detail that fits the needs of enquirer. Detailed information, including research papers and trial reports, for a range of interventions can be accessed online by people who want to know more about the treatment and support services they are, or in some case are not, being offered (although there is still some way to go on getting pharmaceutical companies to open up their research). Looking at organisations funded by the Nominet Trust there are examples of online patient information being provided in terms of detailed lists of specialist support services (e.g. Online ME Centre) and examples of comprehensive libraries of information relating to specific conditions. Digital Technology can overcome a variety of barriers to accessing specialist support, such as transport, location, mobility, language, etc. One of the Trust’s most recently funded partners, Dyslexia Action, is in the process of creating an innovative distance learning platform, using new technologies to provide specialist literacy support. This platform will significantly increase accessibility and will help improve the educational and social outcomes for thousands of young people who would otherwise struggle to access support services only offered through physical centres.

Possibly the most significant contribution of the internet is its unparalleled capacity to connect people. The internet allows people who may live miles apart, even in difference countries, to connect around shared interests, including very specific health issues. Even those patients affected by very rare conditions can make contacts and find communities online that are both supportive and informed. Digital communication technology can also be used to develop personalised support networks which connect family, friends and professionals providing formal and informal care e.g. Tyze.

Digital technology can also play a powerful role in giving patients a voice and enabling them to articulate their views, needs and experiences. An example of a Nominet Trust funded project in this field would be Podnosh’s Impact Assessment App. This app will allow community workers on the ground to record free text of how patients and service users say they are being helped and connect that to simple video and audio stories that document the difference they make and the gaps in services that are being identified. This content will then be analysed for trends and intended and unintended consequences, with the resulting combined and cohesive data presented to policy makers in a clear and usable way. More broadly, e-petitions and campaigns on social media platforms such as Twitter and Facebook can allow groups of patients and service user to self-organise and directly articulate their views to decisions makers and service providers. Digital technology can be used to enable the service users to identify, and communicate directly, with those responsible for providing care services.

The Nominet Trust has recently published a provocation papers by Shirley Ayres titled ‘Can Online Innovations Enhance Social Care’ and I would highly recommend it to anyone interested in this area of work. One of the key insights of this paper is that often patients and service users, for example the elderly, actually have an immense amount to give in terms of their energy, experience and wisdom. Digital technology can play a very powerful role in this respect through connecting like-minded individuals, overcoming the barriers that can lead to isolation and providing a variety of digital platforms to capture and share people’s stories.

Links:
http://www.actionforme.org.uk/get-help/services-directory/index
http://dyslexiaaction.org.uk
http://www.nominettrust.org.uk/what-we-support/projects/recording-real-l...
http://www.nominettrust.org.uk/knowledge-centre/articles/can-online-inno...

#40265 Nicholas Baigent
Professor of Economics and Philosophy
London School of Economics and Health Watch Tower Hamlets

I do not want to talk down the importance of the internet in enabling patients. However, I think Complaints provide the ultimate form of patient empowerment. Because of asymmetric information, in the economists sense, and because patient interests may be confronted with powerful very firmly entrenched interests and views of health care professionals (see you excellent infomatics on patient choice differing from professional advice when fully informed), non complaint activity faces huge obstacles to be effective. Such efforts are constantly hampered by the constraints facing them. However, Complaints are UNDER USED and there is spare capacity already. Of course, complaint arrangements can clearly be improved but what really needs to happen as part of the "culture change" that we hear about so often, is that Patients need to be made to feel that they can complain with high prospects that it will be listened to and acted upon. Thus, they should be asked frequently if everything is OK and strongly encouraged to be critical. They should also be told that, if they wish, they will be given real opportunities to be kept informed about changes made in response to complaints.

At the end of the day, a patient's experience with the NHS is individual not collective, and that is exactly what is true for complaints.

#40294 Ian McDowell
Head of Engagement; Fellow, Centre for Science and Policy, University of Cambridge
Central London Community Healthcare

The point of open access to data is not the access itself, it's what people choose/are able to do with it. And that varies tremendously by age, health status, socio-economic group and geographically.

The very latest innovations (I'm thinking of highly interactive and multi-dimensional apps like Storica, developed by Dana Pavel and Dirk Trossen at the Cambridge Computer Lab) enable both the medium and the message to be personalized and owned by the user in ways we would never have believed possible even five years ago.

One of the landmark changes of the past three years has been the ability of people not just to encounter and absorb more health data, but to co-create their own health data in ways that enable users themselves to achieve a richer appreciation of their own life, to add quantum to their own story. I call these new kinds of stories "quarratives", quantified narratives). Elliot Cohen's work at MIT and the whole Quantified Self movement, controversial as it is, is absolutely key to this.

Investment not just in opening access to data, but in developing and testing accessible platforms for people to co-create and quantify their own stories in ways that bring that data to life for them, is the next big summit to conquer for health economies of all kinds as we seek greater patient and community empowerment, self-management and wealth creation through informed data sharing.

#40296 david burbidge
non
non

Nick your reliance on the complains system is child like beyond belief

#40305 doepublic

The patient is the primary reason for the context. Therefore they should be as near as home as possible and fully involved and informed. Technology and the process should serve the patient not the clinicians or supplier of service. http://endukayted.blogspot.co.uk/2010/02/nine-affirmations-to-help-shrin...
Point 9. From the above. The patient is the primary member of the team.
Unique journeys should be enabled through responsive engagement with a holistic consideration given to physical,social and mental health. The 100% of a person's context should not be devalued in order to serve the purpose of another data set. Responsive personalised prevention and intervention towards risk, encouraging openness and transparency on the journey. Replace reactive depersonalised statistical modelling.

#40307 Heidi Wright
Practice and policy lead, England
Royal Pharmaceutical Society

You ask the question 'what are the benefits of involving patients in their own care'. From a pharmacist perspective, the more we can involve patients in the decisions about their medicines, including those that may lead to them stopping a medicine, the better. If patients understand why and how to take their medicines this will lead to better adherence, reduced medicines waste, reduced hospital admissions and most importantly of all - better outcomes for the patients. We need to really tslk with patients to understand what they want from their medicines. Pharmacists obviously have a key role in medicines optimisation but so do all other healthcare professionals. We will be publishing some guidance on medicines optimisation in the next few weeks and will be found at www.rpharms.com/medicines-safety/medicines-optimisation.asp . This will also include a resource for patients.

#40374 Beatrice Osuntoki
Community Matron/Advanced Practioner
Homerton Foundation Trust- Adult Community Nursing

With my experience, involving front line nurses in the NHS care plan and decision making, will make a huge diference in the NEW NHS. Community nurses are in best place to take on this role. They see patient in their own home and have a very good idea of ther health and social care needs. Patients also trust and believe in their nurses as they come down to their level to explain things.
Also in a multicultural environment involving Ethnic minority nurses in decision making also go a long way in the care of patient.

#40453 TinyTonyH
Healthcare Professional & IT Design
N/A
For patients to feel fully involved with their health and care, they need to understand their clinical record, not in detail but sufficient to grasp the context, and for most patients the Health Profession does not make it easy for them. Patients, or their carers, need to be informed. Information in a language that they can understand. Yes, electronic access can be given to them, by GP's, by hospitals, but tends to be in a format that is more suited to the way GP's or Hospitals work. It also tends to be fragmented with a patients record being in many systems in many differing places. Also how many patients do you see in your working day speak English, has a good grasp of technology both IT and clinical? How can we make this simple, even when a patient turns up in A&E having had a stroke and you need a basic Past Medical History. Could using new technology and social media help? Something that I have been researching and developing over the past few years is using YouTube for my past medical history based on 3D models. https://www.youtube.com/watch?v=C_l3FxRmtnM is an example of how it works Also https://www.youtube.com/watch?v=SzU5hNzhOTY shows an example of a past medical history in 2 minutes, but it could be shown even more quickly if needed. Yes, it has been described as MedicAlert on Steroids, but it is simple enough based on colour and the body to represent Problems, Medications, Operations, Diagnosis & Results, Nursing & Social Care, Self Care. It can indicate allergies (Yellow circle outlined by red). My true video is hidden, only I (and probably You Tube Admin) have access to it. Why use this format? It can be viewed from anywhere in the world, any person can in a matter of minutes understand my record, no need for an interpreter electronic or human. More importantly a child could use it. Yes, a video is probably not the best, but could we use 3D technology in the cloud to visually record clinical information at a high level and use this to communicate in a format nearly everyone can understand? I believe we can. I also know that we could drive clinical information into a 3D record via HL7 messaging and clinical codes such as SnomedCT ICD 10. Yes it is a completely new concept, but technology which is available now. So one day soon we might be able to communicate, record and share information in a completely new way which both patient and healthcare professionals understand.
#40455 TinyTonyH
Healthcare Professional & IT Design
N/A
For patients to feel fully involved with their health and care, they need to understand their clinical record, not in detail but sufficient to grasp the context, and for most patients the Health Profession does not make it easy for them. Patients, or their carers, need to be informed. Information in a language that they can understand. Yes, electronic access can be given to them, by GP's, by hospitals, but tends to be in a format that is more suited to the way GP's or Hospitals work. It also tends to be fragmented with a patients record being in many systems in many differing places. Also how many patients do you see in your working day speak English, has a good grasp of technology both IT and clinical? How can we make this simple, even when a patient turns up in A&E having had a stroke and you need a basic Past Medical History. Could using new technology and social media help? Something that I have been researching and developing over the past few years is using YouTube for my past medical history based on 3D models. https://www.youtube.com/watch?v=C_l3FxRmtnM is an example of how it works Also https://www.youtube.com/watch?v=SzU5hNzhOTY shows an example of a past medical history in 2 minutes, but it could be shown even more quickly if needed. Yes, it has been described as MedicAlert on Steroids, but it is simple enough based on colour and the body to represent Problems, Medications, Operations, Diagnosis & Results, Nursing & Social Care, Self Care. It can indicate allergies (Yellow circle outlined by red). My true video is hidden, only I (and probably You Tube Admin) have access to it. Why use this format? It can be viewed from anywhere in the world, any person can in a matter of minutes understand my record, no need for an interpreter electronic or human. More importantly a child could use it. Yes, a video is probably not the best, but could we use 3D technology in the cloud to visually record clinical information at a high level and use this to communicate in a format nearly everyone can understand? I believe we can. I also know that we could drive clinical information into a 3D record via HL7 messaging and clinical codes such as SnomedCT ICD 10. Yes it is a completely new concept, but technology which is available now. So one day soon we might be able to communicate, record and share information in a completely new way which both patient and healthcare professionals understand.
#40532 James Stewart
Transformation Executive
Healthwatch

The individual or Patient is why the health and social care system exists, this seems obvious but in my recent experience is the first thing that is overlooked. The individual is often forced to meet the needs of the system rather than the other way around, this is not only the patient but also the staff who work within the organisations that serve the end user.

The world has changed, other industries lead the way in delivering customer centered products and services and so set an expectation in the wider population.

The NHS and social care systems have failed to change in a world where change and transformation in other industries is now part of our daily jobs. With health and social care approximately a third of public funding, 9% of UK GDP this has a huge impact on all our lives.
'It is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change' Charles Darwin.....

Will we be able to transform Health & Social care so it serves the people not the system, now we recognise there is a problem based on my professional experience we have taken the first big step.

#40554 Patricia Dearnaley
Managing Director
East Training & Consultancy Ltd

What's missing from this analysis is the impact of the marketisation of social care system. I carried out extensive research last year that considered the extent to which this half-privatised system is damaging service delivery, future provision and quality standards.

#41615 kelly thompson
full time mother
get funds for deaf childrens after school club

Hello, my name is Kelly Thompson I am also profoundly deaf myself. I have got 3 children myself which is 2 of them are also profoundly deaf which is nearly 5 and 7. When I was live in Warrington, Theo cant even talk or communicate none of them it was terrible because mostly ages 3 can do this and that but he cannot. His mind was like 1 year old he was very very behind which is awful time for us but since we moved to Liverpool for his special needs school "Knotty ash school" and after school club the boys goes to deaf club which is they absolutely love it. Since we moved to Liverpool he was improvement with speech, behaviour and talk back I was very shocked and in tears of proud but unfortunately deaf club funds cant afford it anymore and suggest it is closed down. We are very upset and angry because every children's are need their needs and there are plenty of hearing children for youth club so why cant it goes the same for deaf children? Hearing children never behind the speech just like deaf children so they deserve after school club so this is why we need your help with funds for small room from the starter so we aim successful business for deaf children or blind or any disability to make their life happier because money aint everything but happiness is everything. I am sorry if this is not make any sense for you because I use BSL not English. Your sincerely. Kelly Thompson

#41959 Basel
healthcare manager & MBA student

Patients should be empowered to help improve the quality of service provided to them, not to reduce the burden from the shoulders of healthcare practitioners. With this in mind innovative solutions could be reached

#41977 andrew pratt
health improvement specialist
NHS funded health service provider 3rd sector

The KF view of the future is rather naive about the problems we face re climate change, food security, the risk of epidemic disease and the ongoing destruction of the natural ecosystems we depend upon. Health and wellbeing in the future will depend upon achieving environmentally and socially sustainable communities with less (rather than more) technology, more healthy manual work, more people growing food (yes, believe it or not, this means your children etc!). We need a radical shift in how we think about health to realise that up to 80% of our illnesses result from us living unsustainable unhealthy lives.... lets try asnd think outside the neoliberal capitalist box heh? (Oh and vote Green by the way...)

#42311 Nigel Fenner
Founder and Director
SEMPA CIC (or Supporting Employers Managing PAs)

If home based, and led care is to work effectively there is a need for a Contract of Trust between the disabled or elderly person as the employer, and their carer / Personal Assistant, as their employee. The best resource to enable such disabled and elderly people to take up their employer role is the lived experience of their peers. For a promotional video of SEMPA's Contract of Trust resource ( - suitable for groups and individual learning) go to https://www.youtube.com/watch?v=Os5Afb4vOrw

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