An online citizen innovation platform has been launched to bring together members of the public living with different health conditions to share ideas and help develop the next generation of healthcare products.
Design Together, Live Better connects citizens (patients, carers, family members, friends or anyone interested in health) with companies and entrepreneurs to co-create new healthcare solutions based on real needs.
“We need to make better use of people’s insights into their own conditions and lives; they are the experts in what would make life easier and, more specifically, what’s missing and what could be created to help.” Lars Sundstrom, Enterprise Director
Two healthcare projects are already live on the platform and seeking citizen input: a speech therapy app called ‘Intelligent Sounds’, which could be used by people who have suffered strokes or head injuries or have Parkinson’s disease, cerebral palsy or multiple sclerosis; and the ‘Music Memory Box’ which helps people with dementia to recall memories.
The Design Together, Live Better platform has been developed by the West of England AHSN and was launched at the ‘Wisdom of the Crowd’ event in Swindon in April.
The event explored and celebrated the increasing role members of the public play in the co-design and co-production of new products, as it is being recognised that people living with challenging health conditions are best placed to see what features are needed in new products and technologies.
Hilary Newiss, chair of the health and social care charity coalition National Voices, was the event’s key note speaker. Hilary has been central to developing recommendations as part of the NHS Accelerated Access Review on putting patients at the centre of health care.
Three patients-turned-innovators also shared their inspiring stories of designing new products in response to their own health conditions.
Michael Seres invented the Ostom-iAlert after receiving a bowel transplant and discovered a need to improve how he monitored and shared data on his condition with health professionals.
Kevin Mashford was born with congenital heart disease and has spent all his life in and out of hospital. Kevin developed Mi Heart, both a patient app and clinician platform enabling the efficient communication of symptoms, appointments, vital statistics and medication.
Iain Stevenson has type 2 diabetes and has used his IT background both to manage his condition and develop his technology, Soupdragon, the Trustwall API which enables individuals to securely manage their digital identity and personal data, and choose how to share this with health professionals.
However not everyone living with a health condition is in a position to develop their own solution, which is why the West of England Academic Health Science Network has developed the Design Together, Live Better platform to facilitate meaningful dialogue between patients and companies and gather user input.
Delegates at the event were given the opportunity to help share their ideas to shape and develop this new platform, which is currently at beta-testing stage.
Lars Sundstrom, Enterprise Director at the West of England AHSN, says: “We need to make better use of people’s insights into their own conditions and lives; they are the experts in what would make life easier and, more specifically, what’s missing and what could be created to help.
“Our new innovation platform will do exactly that by putting people in touch with each other, to co-design and co-create the next generation of innovative healthcare products so that they precisely match currently unmet needs. I am really excited about this – it could be a real game changer!”
We are keen to work with innovators looking to co-design and test their innovators with users. If you are an innovator with a new concept or product being developed, find out more about connecting with the Design Together, Live Better community at designtogetherlivebetter.org/innovators.
In partnership with Sirona Care & Health and North Bristol NHS Trust, our Human Factors programme offers tailored training to support staff working in community health settings. A toolkit has been developed, supported by face-to-face train-the-trainer sessions and collaborative events for shared learning and problem solving.
Stephen Early is a service user and volunteer with Sirona who has been actively involved in the development of this training programme, from designing scenarios to reflect realistic situations that staff might encounter to giving talks at staff inductions.
This is Stephen’s story, introduced by Karen Gleave, Project Lead for Sirona Care & Health.
Stephen is a service user living in one of our Extra Care Services, and currently is a volunteer with Sirona Care & Health and sits on the service user panel/forum.
I met Stephen just over a year ago when I approached members of the panel about working with me to provide a service user’s perspective for the Sirona support worker induction on what it is like to receive a service.
Once Stephen started it became quickly apparent that he was a “natural” talking with people and able to get his message across about how important communication and human factors are when supporting people. Stephen is able to bring the scenarios alive for the audience, has made people laugh and at times brought people to tears.
Stephen is a very inspirational person and has touched the lives of many. The feedback we receive after each induction is really very positive…
It really shows the great value that service users can make to organisations and how they can help to shape future services.
Unfortunately I’ve caught pneumonia about six or seven times, and on about four or five occasions I’ve been took into hospital…
… because I was living by myself I’ve had problems with eating for about six years.
… one of the things they do here is try and make me eat and drink so they make me a sandwich now and then, or every time they come in, no matter what they’re going to do they always make me a cup of tea and put it in front of me, and I feel if they’ve made me a cup of tea, then I should drink it, even thought I don’t feel thirsty if that makes sense, and when I go up to Karen’s they the same, everyone does the same. “Tea Steve!” and it’s great.
So one day the doorbell went and the lady came in and she was a support worker. I think she was, I’m not sure now. She came in and said [grunting] “Alright.”
Well, straight away you know that you were not going to have a conversation with this lady about anything and the worst thing is that these sort of five, ten minutes ones which you might get spread out between the day, maybe three times, maybe four, not sure, all depends on what your needs are, are very important to everyone because it’s communication. It’s talking to someone.
And loneliness in these sort of places is quite bad actually because you know it has an effect on them and on their health as well. Because if you’re feeling down, you’re more likely I feel to get things wrong with you and depressed and things like that, so it’s quite important when people come in that they’re a bit… and say things. So when she came in I knew straight away I wasn’t going to have a conversation with her.
Now if I was feeling a bit unwell or anything like that, or had troubles or things, I wouldn’t have talked to her about it because I knew she wasn’t in the right mood to receive any sort of information. And then she came and said, “Got to make you a drink.” Now “got to”, so that hit me home that “got to” is not “Oh, I’m going to make you a…”, “Got to make you a drink. Can’t understand why you can’t do it yourself.” That was a little whisper underneath the voice.
And then the sandwiches… “What do you want in your sandwiches?” I said, “Well anything please” and then again I heard her say, “Can’t understand why you can’t do it yourself” and then she left. And as soon as she left I got up and I chucked the tea down the sink, and I put her sandwiches in the bin because I wasn’t going to eat or drink anything from someone who didn’t’ want to do anything for me and it made me feel really bad.
So that went on for about six or seven weeks. I stopped taking food, and when they did make me food I just tipped in the bin, and the drinks, because I felt like no one wanted to do it and they didn’t understand me. They didn’t’ understand my problems. They just thought I was lazy. So it didn’t matter if they came in happy or joyful, I would still do it. That was quite a bad experience.
And then a good experience was one lady come to see me, well lots of them. And they come in and ring the bell [brightly] “Hi Steve!” Straight away you know you’re going to have a positive talk to that person and positive reaction. And you’re going to say to that person if there is something troubling you, you’re going to mention it to them, you know, “Oh I don’t feel too good today… Oh I’ve got this problem” or whatever.
And the other thing is they come in and say, “What have you been up to today? What’s been going on? What are you going to do this afternoon?” All them little things, you know, it helps the conversation to go through and it is brilliant. “Oh,” she said, “Is it two sugars, Steve, innit? It’s two innit?” Them little things, it’s not like “Oh, I gotta make you a cup of tea” or anything like that. It’s “I’m going to put in two sugars.” Some don’t even talk about it they just do it and bring it out and put on the table which is brilliant so it’s them sort of things…
…unfortunately the people, some of the residents we have here, I call them my family because they are they’re all my family, and I tell them that. Anyway, they’ve got problems some of them and some of them suffer with memory loss, Alzheimer’s, so they’re not able and some of them can’t speak properly and they cannot relay to the support workers what it means, what they mean to us and they mean everything.
I call all of my support workers “my ladies” because that’s what they are. They’re my ladies. And they’re here… if it wasn’t for them I wouldn’t be here, they mean so much. Doesn’t matter if they come in and make me a cup of tea or just the simplest of things like help me taking off my shoes. My legs swell up around about half past two in the afternoon. They come in and take my shoes off and they always make me a cup of tea when they do it, and they have a little chat whilst they do it, and it means so much.
And I’m able when I go on my induction days to translate to them what they actually mean to people like me and the rest of the residents what they’re doing. Their job’s just as much important as a doctor or anyone like that because they’re doing something to help and they’re not only helping in the sense of doing something like giving someone tablets at the right time or doing some domestic or whatever or making sure someone eats. They’re actually talking to that person, which is fantastic, which makes them feel good.
… if I can hit that one person at induction day and she stays doing caring for maybe ten years? So she might see thousands and thousands of people on her journey through her career. If she carries that through, with all of them, what a magnificent difference that’s going to make! So that’s how I think of it.
Stephen was the winner of Sirona Volunteer of the Year 2015 for his work on the project:
The West of England AHSN is awarding £65,000 in funding to four community organisations to support the roll-out of Human Factors training for support staff.
Communication and team working are recognised to have significant impact on the quality of safe services for patients. Following the Cavendish Review, the Care Certificate specified standards for support workers (Bands 1 – 4) working in all NHS and social care settings.
Although an appreciation of the principles of Human Factors has been implemented in acute care services in recent years, it has been found that training packages and resources are less applicable to the community health and social care context.
Health Education South West has therefore funded the West of England AHSN to develop an intervention using the SBAR tool (situation, background, assessment, recommendation) to support Human Factors training in patient safety focussing on support works in community settings.
The curriculum for this training was developed by Sirona Care & Health and North Bristol NHS Trust. It is based on how teams communicate and uses communication tools such as SBAR to develop a baseline awareness, which is built upon and embedded during the training using different scenarios. These scenarios were co-designed by the programme lead and service user representative to reflect realistic scenarios that staff might encounter.
To date, 435 staff from community organisations have already received Human Factors training. The West of England AHSN is now providing £65,000 funding to Bath & North East Somerset CCG, Bristol Community Health, Gloucestershire Care Services and North Somerset Community Partnership, which will enable a further 2,500 staff in community settings to receive training.
Train the Trainer
In conjunction with North Bristol NHS Trust and Sirona Care & Health, we are also training up to 45 facilitators across the region in order to create a faculty with specialist knowledge and experience in Human Factors training for community services.
Organisations that have been successful in their bid for West of England AHSN support are invited to book training dates for facilitators to build the faculty in their organisation skilled in delivering Human Factors training. In order to book you will need a code for access. If you have not received your code, please email firstname.lastname@example.org.
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