Dementia Choices Action Network (D-CAN) – Starting out using video to share

Last week I was very fortunate to be involved, as videographer and digital storyteller, in the inaugural National Assembly of the Dementia Care Choices Action Network (D-CAN). D-CAN brings together a number of stakeholder organisations with an interest in Dementia with NHS England and Improvement, Alzheimer’s Society, the Coalition for Collaborative Care and others, including people living with Dementia. A key aim of the network is to embed the principles of Universal Personalised Care (UPC) into the practice of supporting people with Dementia across the Health, Social Care, and voluntary and community sectors. D-CAN aims to provide a space wherein innovative practice and lived experience can inform practice at all levels.

i am pleased and excited that D-CAN has begun by recognising the power of video in disseminating messages and ensuring that members can learn from each other. Members want to break down the walls that exist between professional disciplines, between different organisations, between organisations and patients, and between people in the room at meetings and those who can’t be there. And it is this latter aspect that I want to talk about here. I have long believed that the public and non-profit sectors are failing to take advantage of the tools that the internet has given us to communicate beyond normal boundaries. Particularly where organisations are seeking to communicate messages and engage people in their work, it seems self-evident to me that using online video and social media will spread their reach far beyond the walls of the room they are in. That this is happening far too infrequently is a great source of frustration. Ian Donaghy, who hosted the Assembly, mentioned a number of online video resources during his comments, and he asked the audience who was aware of them. Very few of them were, and this is telling.

Stepping away from the direct field of Dementia for a moment, I am going to cite the case of Molly Watt. Molly is an inspirational young woman who lives with Usher Syndrome (which causes deaf / blindness). She has created her own Foundation, works as an accessiblity consultant, and uses online video and social media to document her life and how she uses new technologies to live as full a life as possible despite her limited vision and hearing. I know that she has provided inspiration for many others living with the same condition and given them confidence to overcome the barriers they face to achieving their ambitions. Peter Berry was diagnosed with Early Onset Dementia at the age of 50. He has made more than 100 of his weekly video diaries documenting the challenges of living with his condition. Usually his diaries are just him and his camera, but he has occasionally involved his wife, his daughter, and friends to give a perspective on what it’s like living with someone who has Peter’s conditon. A few years ago I was videographer at two North Wales Dementia Meetups. At the first event I interviewed a number of people in the audience who were living with Dementia. Several of them told me that their diagnosis had left them depressed and despondent. A year later, at the second event, some of those people were on the platform telling their stories and recounting how the first event had given them inspiration to turn their lives around and take positive actions to overcome the limitations of their condition.

OK, so the last example is about inspiration coming from the people you directly interact with, but there cannot be any denying that online video amplifies and spreads the ability to learn from how others do things. And that these lessons are all the more powerful when they come from people like you, living daily with the condition you live with than from official sources.

The fact that D-CAN is making some steps towards recognising that online video has a role to play in connecting people beyond physical meetings is, to me, a great, positive step forward. I believe we need to build on this step and roll the use of video into further meetings and into helping those living with Dementia to learn from each other. And we need to extend this practice into many other areas and many other conditions.

The growth of the internet has brought with it an explosion in the use of online video. More than a year ago, a report was published which showed that young people watch Netflix more than they watch the BBC. The millions of hours of online video which exist represent a major learning opportunity that, by and large, our public institutions are not making adequate use of. And they need to be seeding this resource with their own content that people can draw on. I am hopeful that D-CAN can be part of this process.

All the video from the first National Assembly of D-CAN can be viewed here. The video below, of the delegate interviews starts with Christopher Richmond, who lives with Dementia himself, telling his story. This is just the kind of thing I want to be able to support more of.

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Is Local Radio the Route to Digital Inclusion?

I’ve been doing increasing amounts of local radio in recent months. I’ve been appearing regularly on BBC Radio Leeds, on the Breakfast Show as the New Technologies “Professional” (usually a 10-minute slot) and, once a month, on the Big Yorkshire Phone-in, doing “Tech Hour” in the afternoon. I’ve also done a few slots this year on BBC Radios Sheffield, Derby and York. One of the reasons I like doing this is that I have become increasingly convinced that radio is the route to reach digitally excluded people. I have been searching for some time for tools to reach people who are not online at scale, when you are just an individual freelancer like me, and not a big organisation with a substantial budget. If you are reading this then you will be well aware of the powerful reach of social media and of tools like YouTube, but digitally excluded people don’t use these channels, so where can you reach significant numbers of them?

I don’t think it’s giving any secrets away to say that the demographics of the audience of BBC local radio stations tends to be weighted towards the older age group, and it follows that a proportion of them will be digitally excluded. The listeners’ questions when I am on the air tend to range between the very basic to the guy who wanted to ramp up the RAM on his Android phone. On one occasion, as I was leaving the studio after doing “Tech Hour”, the producer called me over to tell me she had a lady on the phone who hadn’t managed to get through while I was on air, but she wanted advice on where to get started on tech as she had never used a computer or smartphone. I suggested that she start with her local library; the lady didn’t know if she had a local library; the producer Googled it for her, and found that there was one, but it was open restricted hours and staffed by volunteers. I don’t know if it was anything I said on the radio that inspired her to want to get online, or that it just happened that she was spurred to do something by hearing the programme, but this is just the kind of person that I think local radio can reach.

I will continue doing what I can to reach out to people over the airwaves and, hopefully, to convince some that the world of digital technologies is not at all scary and will enhance their lives. I think radio is a powerful tool to reach digitally exluded people. If any other radio stations want to work with me on this, Please get in touch.

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While you are here, can I please ask you to take a minute to subscribe to my YouTube Channel here

If you would like to support me to do more of my work in using Digital Storytelling, social media, and video for social good, please consider making a regular contribution via Patreon or perhaps, just buy me a coffee here

Lessons from a Connected Christmas

Is it too late to wish you a Merry Christmas? Well, I hope you had a good one.

I’ve been running a number of Connected Christmas events this year using the pretext of a Christmas party to try to turn older people on to the benefits of having new technologies in their lives.

This is always a difficult and challenging task, but I have to admit that this year it appears to have been particularly challenging; and I suspect I won’t do Connected Christmas in quite the same way in future years. I still want to use the opportunity of the approach of Christmas to highlight social isolation and loneliness amongst older people, and the role that new technology can possibly play in addressing this, but I am increasingly coming to the point of view that Connected Christmas needs to be a stage of the process which needs to start much earlier than Christmas.

This year the proportion of people I engage with who say “not interested….  new technologies are not part of my life” is higher than it has ever been in the past. Now I think a lot of it is part of a trend, in that it’s something that has been developing for years now, that the people who are truly digitally excluded are increasingly the hard-core who are super resistant to having new technologies in their lives. It’s not just a question of lack of skills and a lack of interest, it’s an active resistance. And I would like to add a word of congratulations here to the mainstream media. Thank you newspapers, thank you TV and radio stations, you have done a brilliant job of making sure a whole generation is excluded from the Internet. The amount of times I come across the comment that I don’t want anything to do with that because it’s all about fraud, or if I go on the Internet I’m going to get scammed.

But another possibly related issue that I keep coming across is older people who say to me that “that kind of stuff is the bane of my life. My children and my grandchildren are on it all the time and it means I can’t get them to talk to me”.  I try to counter that attitude by saying to people that, if you learn how to use those things yourself and you engage with them, then you will have something in common, you will share interests and you will be able to join in the conversations your family members are having online. I’m struggling to get that message through however, and I am increasingly coming to believe that digital technologies are increasing the generation gap because younger people are immersed in a world that their older relatives are not participating in, and, in many cases the older people are actively resisting opportunities to join in.

I find this frustrating and baffling to a degree. But I don’t think it is unsurmountable. A while ago, I wrote a piece about “Technology-Enabled Nattering” because I believe that what older people really want to do it chat with each other. And when I say “chat”, I mean it in the original sense of the word, not its internet incarnation which involves doing a lot of typing or key-pressing. That’s why I am still looking for funding (anyone, please?) to run some pilot projects which get people talking to each other on a regular basis via video conferencing. And, I want to throw out a challenge here. I think devices like Alexa and Google Home offer the opportunity for social networks to move beyond typing and photographic-based interactions and towards real conversations, involving voices not keyboards. That way older people need no longer be excluded from their younger relatives’ social media interactions. Done right, this approach could mean a real breaking down of the digital divide between the generations. What do you think of this idea, please comment down below.

I hope you have a great New Year. I leave you with a video I recorded just before Christmas, which encapsulates my idea that we should form support groups to crowdfund the purchase of tablets to connect lonely older people to friends and family. What do you think of that idea?

The Chancellor’s Announcement About Rural Broadband – Eventually You Get Proved Right

Yesterday the Chancellor of the Exchequer announced a further funding programme for rural broadband. This is designed to take faster internet connections deeper into the “difficult to reach” parts of the countryside.

There are two notable things about the proposed strategy here. The first is that it is based on what is called “full-fibre”. That means fibre optic cable right into the premises, not, as has mainly been the case to date, running fibre to street cabinets and then relying on the ancient copper cables to take the signal the rest of the way. This can be for miles in some rural areas, and the signal degrades over copper, whereas it doesn’t over fibre. Some of us have been calling for a “full-fibre” strategy for years, and, at last the Government has caught up with this, but only after wasting millions of pounds on propping up the antiquated copper telephone network.

The second notable element is that the new strategy is based around connecting up public sector buildings, especially schools, to the fibre network, and then connecting up the remainder of the community from there.

In 2011, redoubtable broadband activist Lindsey Annison had a plan identical to this to connect up the community of Warcop in Cumbria. Below are some videos I took on the Fibre Walk she led over the proposed cable-laying route. This plan could not be implemented because we were told that it was not feasible for schools to share the connections with non-educational sites. That policy has now been over-turned, but only 7 years later. How much time and money has been expended in pursuing temporary solutions till now?

It is good to be proved right, but why does it have to take so long?

Connected Christmas 2018

And so, here we are again. It’s time to plan for Connected Christmas 2018.

 

I think this is the fifth year I have done this. We still haven’t solved loneliness among older generations (and this is in spite of recent research which concluded that loneliness was a bigger issue among young people than among older citizens – this is not a reason to ease up on tackling older isolation); and we still haven’t made mainstream the idea that older people can use new technologies to connect with each other and with family, friends, and health and care providers.

These are the reasons why I run Connected Christmas Parties. These are events where older people celebrate Christmas (I am not talking about on Christmas Day here) in the usual way, but part of the mix is that I show them how they might use new technologies to make their lives more connected, more fun and more informed. I do this for a few hundred pounds per event. This does not include the cost of room hire and catering. The events work best where the Connected element “piggy-backs” on an existing event which people are already commited to attend, in a familiar environment.

I hope in the next week or two to be able to announce some exciting news about a plan for a number of Connected Christmas events in Huddersfield and possibly the wider Kirklees District. Watch this space for that. But I want to make Connected Christmas a national, and even international movement, so I would love to run one every day over the Christmas period, and, if its feasible, all over the UK. So please contact me if I can help you run a Connected Christmas event in your area.

It is vital that we get older people more connected to reduce their social isolation, to help them access online services and to benefit from connected health and care services. If you share these objectives, please get in touch and let’s make Connected Christmas a key feature of the forthcoming festive period.

I’ve set up a crowdfunder to help me take Connected Christmas to a wider audience. Please help and share if you can https://www.gofundme.com/connected-christmas-2018

Live-streaming a Patient Participation Group

I am very excited that this Thursday I will be undertaking what I reckon must be a world-first; I’ll be live streaming a Patient Participation Group (PPG). From 6:45pm, the Library House Surgery PPG in Chorley, Lancashire will be live streamed on the surgery’s Facebook Page. I have long been an advocate for live streaming as a means to involve people in the work of public agencies, and I am very pleased to be part of this groundbreaking opportunity to open up the PPG to those who cannot attend meetings.

I am happy to be working with Healthier Lancashire & South Cumbria and Redmoor Health on this initiative.  For any organisations who want to do something similar to engage wider audiences in their work, please get in touch.

Here’s my YouTube video trailing the event.

Thanks for reading.

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Why I do Digital Storytelling

This is a brief post about why Digital Storytelling is so important to me.

I believe the world needs to change so that there are more opportunities for people to improve their lives, so that organisations are more responsive to people’s needs, and so that power structures are more representative of the diversity of society.

Every day I come across examples of great initiatives which are contributing to these objectives, but all too often they exist in isolation from each other and from policy and power mechanisms which could translate them into coherent social movements.

As an example, I have only today seen someone from a major organisation revealing in a tweet that they have only just become aware that Britain has a Housing Crisis.

The digital storytelling I do aims to shine a light on people and organisations doing great work to make the world a better place. The most powerful stories of all are those which enable the people who benefit from such work to describe and demonstrate the difference it has made to them.

Here are some examples:

Most people think that social care is in terminal crisis. While no one could deny there are huge problems, every day millions of people work to deliver the best care they can in challenging circumstances.

Policy makers have for years believed that Britain’s South Asian communities did not want professional social care organisations interfering in their family relationships. Probing beneath the surface can reveal the truth.

All too many people believe that a diagnosis of dementia is a death sentence. Events like the North Wales Dementia Meetups prove that people can continue to live fulfilling lives with the condition.

It is not true that older people don’t use technology. Some get great benefits from it, but most don’t. Here are some of those who do use it to enhance their lives.

And sometimes it’s all about having fun.

 

I’d love to help as many people as possible to use this kind of storytelling in their work. If I can help you, please get in touch

Technology Overcoming Rural Social Isolation

 

A couple of weeks ago I was working at a fabulous, inspirational event, the World Health Innovation Summit Fylde Coast (#WHISFC18) held at the Winter Gardens (above) in Blackpool. If you are not familiar with the umbrella body, the World Health Innovation Summit, check it out here, but, in summary, it is a rapidly growing movement of healthcare professionals and patients dedicated to putting people in control of improving their own health.

This is the first of a series of blog posts stimulated by the people I met and the initiatives I learned about at #WHISFC18.

Professor Niall Hayes is Professor of Information and Organisation at the University of Lancaster. As I was interviewing him for the video below, I became increasingly excited about what he was saying, as I recognised how it accorded with my own interests and ambitions. As part of an EU-funded project, Niall and colleagues have been developing an app called Mobile Age which aims to overcome social isolation among older people in rural South Cumbria. Here Niall talks about the principles behind this work.

 

I chatted further with Niall over lunch, and then he started to demonstrate the app, so I whipped out my camera and captured his explanation (see video below).

Mobile Age is a social connectedness app. It has been co-created with older residents of South Cumbria. At its core is open data about local events which people can use to plan their itinerary and ensure they can get out and about. It encompasses the ability to add events to a calendar as older people often enjoy constructing an agenda for the week and planning ahead.

Critical to the function of the app is an age-friendly map. This has been designed with clear lines which are more visible than some other mapping systems. The map shows benches, toilets (including available toilets within shops) and bus stops. This allows detailed journey planning to take place, including the ability to plan how to get to and from a venue before darkness falls.

Volunteering and educational opportunities are included, as well as links to vital services.

One of the key elements is the personal profile which allows the settings and itineraries to be saved. It also allows someone working remotely to add items into the profile, meaning that someone more tech savvy who is located distant from the user can help them populate their profile and plan their calendar.

I think this is a great initiative which deserves to be used more widely and replicated for use elsewhere. It epitomises my view that technology can be used to bring people together and to help them interact in the physical world, and that it is in no way de-personalising.

 

Added on 18th July 2018:

In the past couple of weeks I have done some work with the Mobile Age team undertaking video interviews to contribute to the evaluation of the programme.

Also, here is a great explanation of the approach given as part of a news item by ITV Border

 

 

Technology-Enabled Nattering

Last week I went to interview an older man for a project about technology-enabled social care. We chatted for ages. Not much of it was relevant to my commission, but that was fine, I got enough footage for the project, and I was happy to talk. The gentleman had some fascinating stories to tell. One of those stories was about how his adopted son in Australia had bought him an iPad which he uses to “have a long natter” with him, over Skype, twice a week. He has been doing for years, originally using the “Friends and Family” discount option on the telephone, then via Skype on a laptop and now on his iPad. He was explicit that these interactions enhance his life. He also said that the technology-enabled care platform his carers use has made his life better because it means that carers who visit him have to stay for the full-allotted time, and that means they are more likely to chat with him.

I am becoming more and more convinced that technology-enabled nattering is the way to introduce older people to the benefits of new technologies. Many older people love to chat, but don’t have the opportunity to do so often enough. They love to chat, but they don’t love to type. Video conferencing is the way forward.

 

Serendipity Screens

In the last few years when I have talked to some people about my work getting older people to access the benefits of being online, a number of them have told me that older citizens do not take to social media. This may be true, in some cases, although I have seen quite a few examples of grandparents linking with their families through Facebook and WhatsApp. It could well be that fewer members of the older generation want to type or tap messages that do their younger counterparts, but there is something that many want to do more of, and that is talk. Could it be that the thing that makes social media attractive to time-poor younger generations, the ability to exchange messages very quickly and frequently, is the thing that puts off older citizens as they want deeper, more meaningful interactions.

Now, I know I am making a lot of sweeping generalisations here, but please bear with me. The other day someone was telling me about their mother who had been complaining to them that their father had discovered Skype. She complained that he spent every evening talking “rubbish” loudly to his two sisters in different parts of the country while she tried to watch television in the next room. At Digital Tea Parties and Connected Christmas events I have often found that Skype (or other video conferencing apps) are popular, partly because they don’t involve people with potentially arthritic fingers having to type, but also because they can be seen as a direct extension of the kinds of interaction people are used to having with those around them every day.

I have long railed against the idea that older people need to be taught to use utilitarian software of the kind that is common in offices. But maybe we need to go further and explore in-depth what more use of video conferencing can do. If people are at home and lonely, why can we not make use of “always on” video and audio connections to ensure they always have someone to talk to?

Which also brings me to the idea of “Serendipity Screens”. A couple of years ago now I heard a radio programme during which the manager of a chain of theatres in the United States talked about how they had interactive screens in the bars connected to each other. The idea was to get people talking to others in a different theatre, who were likely to be watching a completely different production, about their experiences and impressions of what they were seeing. I think this is a brilliant idea to get people who would otherwise not have a connection with each other talking and cross-fertilising ideas.

So, I am looking for partners and funding to explore how we can make more use of video conferencing to connect older people together. And to install “Serendipity Screens” in places like Day Centres and Sheltered Accommodation to get people talking to each other across geographical and cultural divides.

Please get in touch if you want to work with me on this.