We are very much looking forward to the annual Digital Legacy Conference in Siena College, Albany New York later this month. The Digital Legacy Conference is a free to attend and focused around sharing best practise, research data and ideas.
This year we will welcome a range of fantastic speakers from a diverse range of backgrounds. The keynote will be delivered by Shelby Lindblad (Product Designer at Facebook) and Kim Malfacini (Associate Manager of Product Policy at Facebook). The conference will take place in Siena College, 202 Roger Bacon (auditorium), in Casey’s and the Dining Hall at the following times.
Open 11am EST
10.30am: Continental Breakfast, Tea and coffee (compliments of the Albany Guardian Society) served outside the auditorium.
11.05am: Jennifer Muldowney (Tedx survivor, author of book ‘Say Farewell Your Way’, event planner and spokesperson worldwide on death, funerals and end of life planning.) Welcome and introduction to the conference.
11.10am: Stacy Macleod (Freelance journalist and author) – Untangling Digital Legacy: Common Threads and Conversations (30 mins)
11.40am: Stephen Hans – (Funeral Director, Hans Funeral Home) – The Impact of Online Technology and Social Media on the Funeral Industry (30 mins)
12.10pm: Lee Poskanzer (CEO of Directive Communication Systems – DCS). – Digital Assets Directives – the law and online behavior (30 mins)
12.30pm – 1.20pm: Lunch available at Casey’s or the Dining Hall on Campus (fee)
1.20pm – 1.30pm: Antonio Estevan Huerta (singer/songwriter, marathon runner and world traveler) – A letter to David Bowie from a Palliative Care Doctor – reading
1.30pm: Dr. Carla Sofka Ph.D., MSW (Professor of Social Work at Siena College. Former medical and hospice social worker) – Digital Legacy, Social Media, and Grief in Today’s World (30 mins)
2:00pm: James Norris (Founder of the Digital Legacy Association, The Digital Legacy Conference & DeadSocial). – Digital Asset planning included as a holistic approach to an advance healthcare directive in the UK. (30 mins)
2:30pm: Shelby Lindblad (Product Designer at Facebook) and Kim Malfacini (Associate Manager of Product Policy at Facebook) – Memorialization and Legacy Contacts on Facebook (30 mins)
3:30pm: Jennifer Muldowney – Thank you & closing remarks.
3:30pm: Panel discussion (if there is time)
The Digital Legacy Conference is being co-sponsored by Siena College’s Social Work Department with support from the School of Liberal Arts and the Vice President for Academic Affairs. Support from The Albany Guardian Society has helped ensured that the conference is free for all to attend and that breakfast, lunch, tea and coffee is free for attendees.
We have been working on a number of campaigns over the last few months and raising awareness about the importance of digital assets and digital legacy across an array of sectors.
Photo of James Norris speaking on Jon Richardson’s Ultimate Worrier TV show (UK).
Digital Legacy News
- The Digital Legacy Conference 2018 and call for speakers was announced last week. We are delighted to be working with the social care department at Siena College for the conference and that it will take place in the USA for the first time. Over the last four years the Digital Legacy Association have campaigned tirelessly and seen positive changes in attitudes and behaviours by the general public. The Digital Legacy Conference has been a great way for best practice to be shared and attitudes around this area normalised. After presenting at the European Association of Palliative Care conference in 2017 the feedback obtained helped validate that we should expand our reach. The feedback obtained in our digital death survey also further validated that more support was globally. We appointed Dr David Buxton as our America’s lead and will work with David and Sienea College to localise our framework and resources to ensure that they are suitable to use across the Americas. If you are interested in speaking at this year’s Digital Legacy Conference please view the call for speakers section here: https://digitallegacyconference.com/call-for-papers
- We will work with Siena College’s social care department in October to localise our public and patient awareness material. Once this work has been completed it will be available for hospices, hospitals and the end of life sector in the USA to download and use (for free).
- Dr. Elaine Kasket (Bereavement Lead) has completed writing her book on digital legacy: All the Ghosts in the Machine: Illusions of Immortality in the Digital Age. We look forward to its publication with Little, Brown UK on 25 April 2019. Look out for Elaine in the media over the next few months as the book approaches publication.
- Lucy Watts MBE (Patient and Young People Lead and James Norris (Founder & European Lead) spoke together for the first time at St Giles ‘Social Media in Palliative Care‘ conference. They have also been working on a number of other projects (to be announced in due time). Lucy will also present virtually at the Digital Legacy Conference 2018.
- We have received a small grant from the RE: Imagine End of Life, New York fund. More information will be released about this soon.
- We will be raising the awareness about the importance of planning for our digital death in Lisbon, Portugal at the annual ClickSummit. We will be in Lisbon between the 8th-11th October and would like to visit hospices, end of life and palliative care professionals whilst visiting. Please get in touch if you would like to meet during this time.
- Our work and campaigning continues to influence behaviour and policy. Whether it’s the BBC or the Israeli Internet Association, funeral, social care or legal sector. If you would like us to help support what you do get in touch.
- We will be providing the keynote seminar at the National Celebrants Convention. Tickets can be purchased here.
We have been working hard over the last few months on a variety of different projects. Here is an update of a some of them
- In March we provided more over the phone support to the general public than in any other month to date.
- We have designed and launched a public awareness poster (below). This is free to download and print and can be displayed in hospices and hospitals. There are versions for Dying Matters and Byw Nawr Awareness Week. to download one of the posters click here.
- We have contributed to a range of publications both for print and online.
- We ran workshops for; North West Association of Bereavement Coordinators, Association of Palliative Care Social Workers, St Gemma’s Hospice and participated in Mishcon de Reya’s Digital Legacy roundtable
- We have updated our For the Public Page (a number of new tutorials will be released here in the coming weeks)
- We were filmed for a national TV channel in the UK for an upcoming TV series (information TBA in May)
- We will be speaking at The End of Life Conference, St Giles Hospice Lichfield on the 19th June and tickets are now on sale for the Second National Convention for Celebrants, Kettering Conference Centre (more info)
- We have made a number of updates to the Digital Assets and Digital Legacy framework (further updates will be made in late May)
- We are campaigning and working on a variety of other projects (that we hope to share with you soon).
- Dr David Buxton has agreed to become the Digital Legacy Association’s Lead of the Americas and Marcos Sebastian the Digital Legacy Association’s Design Lead.
It has been a busy start to 2018 and we are working hard to widen our support for the general public and professionals across the globe.
- The Royal College of Physicians recently published the excellent ‘Decisions about end-of-life care’ with articles from the likes of Professor Bill Noble and Dr Ollie Minton. We wrote a feature for ‘the future of end of life care’ section highlighting why we feel professionals should discuss digital assets and digital legacy with their patients.
- We are delighted to announce that we will be speaking at the Celebrants Convention 2018 and we will be running training courses for both the North West Association of Bereavement Coordinators and for The Association of Palliative Care Social workers and the Social media in Palliative Care Conference at St Giles Hospice (information TBA soon.
- Our team page is now live. This highlights specialists within specific verticals and team members covering different geographical regions.
- We will provide more training dates and exciting campaigning news in the coming months.
Photo of the first ever ‘virtual poster presentation’ being presented at Hospice UK’s Conference 2017.
We were recently asked to contribute to to the BBC’s ‘We need to talk about death’ show with Joan Bakewell. The full show was aired twice on Radio 4 and can now be streamed from The BBC’s iPlayer: http://www.bbc.co.uk/programmes/b09jf1zb
The Digital Legacy Association also contributed to the ‘BBC Minute’ article ‘Five Ways to Manage Your Social Media Accounts’ that took it’s inspiration from our Sorting out your Digital Assets and Digital Legacy Leaflet resource.
The Digital Legacy Association launched at Hospice UK’s conference in 2015. We are delighted to announce that we will be back in Liverpool for the third year in a row. This year we will present and co-present two posters. The poster we will be presenting is titled ‘Changing attitudes and behaviours towards digital legacy and digital assets’. The second poster will be presented by our friends Byw Nawr (Dying Matters in Wales) and is titled ‘Advance Care Planning across England & Wales’. This poster will focus around the new Advance Care Plan resource that we contributed to earlier this year.
The Digital Legacy Association’s interactive poster at Hospice UK’s Conference in 2016
About Hospice UK’s Conference
Spanning three days and offering a wealth of plenary and parallel sessions, the conference showcases the latest thinking and developments in the palliative care world and provides an opportunity to hear from experts, network with peers and meet organisations who supply products and services to the sector.
Hospice UK have designed the conference for clinical and non-clinical leaders alike – in the NHS and the voluntary sector, from chief executives to trustees, clinical directors to front line nurses and doctors, directors of income generation and communications to heads of business development. Some 800 delegates from hospices, NHS trusts and academia are expected to attend between the 22-24 November at the ACC in Liverpool.
Get in touch with the Digital Legacy Association
If you are attending Hospice UK’s conference and would like to discuss how your Hospice can better support patients and their families with their digital assets and digital legacy get in touch beforehand.
To register for this year’s Hospice UK conference click here
I spend much of my life online, naturally using social media sites including Facebook, Twitter, YouTube and Google+, Instagram and Linkedin. I recently downloaded the Digital Legacy Association Social Media Will to document my wishes surrounding my social media accounts and what I want to happen to them after I die. I have a life-limiting condition, meaning I have had to do my end of life planning and put things in place for when the time comes, including my advanced care plan, my funeral wishes and lasting power of attorney (LPA). Naturally, my social media will is a part of that end of life planning. I have kept putting this off but have finally completed my social media will and will give a copy to my family and keep a copy in my files.
We live so much of our lives online. We live through our social media accounts as much as we live in the real world. Social media has brought a whole new world of connection and participation and we share our lives and information about us on these social media accounts in the knowledge we have control over who sees them and what happens to it.
However, we are all going to die one day. What happens to our social media accounts when that happens? Well, unless we plan for it, the account could be left online when we don’t want it to be, or it could be deleted against our wishes by well meaning family members. It’s important we all plan ahead for our deaths, including our social media will. You may want your account to be memorialised, closed or deactivated. You may want it to be kept online for people to remember you by and to interact with your account, much like visiting your grave but online instead. However you may want your social media accounts closed and your information taken off the internet. If you don’t plan your social media will and do not appoint a digital executor for your social media accounts, your wishes surrounding your social media accounts may not be followed, especially if you have never discussed these wishes with those around you.
Having my social media will means my mum knows exactly what I want to happen to my account. She will also post blogs for me after I have died and upload the legacy video I have just made. Not only will she be left with the social media will, but I have created a document with instructions on how to manage my accounts, how to post blogs and how to share the legacy video, so that she can follow my wishes exactly.
— Lucy Watts MBE (@LucyAlexandria) July 24, 2017
Have you planned your social media will? If you use social media, I urge you to complete a social media will and appoint a digital executor to manage your accounts and your digital life after your death. Just like making a will for finances and other items, your social media will is just as important. So get planning!
Lucy Watts MBE. 23 year old Patient Leader, Charity Ambassador and Trustee, Writer and Speaker. MBE for services to young people with disabilities in the 2016 New Years Honours, aged 22. A positive, driven, self-motivated, grateful and determined (or stubborn) overachiever. Also the owner of Assistance Dog Molly.
The Digital Legacy Association have been advising the Law Commission in areas relating to digital assets, digital legacy and UK law. We fully support today’s announcement by the Law Commissions and their intent to modernise the law in order to make will writing easier for the general public. Today’s announcement stated;
The law of wills needs to be modernised to take account of the changes in society, technology and medical understanding that have taken place since the Victorian era. This morning the Law Commission announced:
The significant changes relevant to a review of wills law include:
- the ageing population and the greater incidence of dementia;
- the evolution of the medical understanding of disorders, diseases and conditions that could affect a person’s capacity to make a will;
- the emergence of and increasing reliance upon digital technology;
- changing patterns of family life, for example, more cohabiting couples and more people having second families; and
- that more people now have sufficient property to make it important to control to whom it passes after their death.
Digital Assets and Digital Legacy
You can read the full report by the Law Commission here (PDF)
The Digital Legacy Association will continue to work with the Law Commission over the coming months. We will also continue to campaign, raise awareness and support both professionals and the general public in areas relating to digital assets, digital legacy and grieving online.
We are now half way through Dying Matters Awareness Week. This is our favourite week of the year and something that we whole heartedly support.
In 2017 Dying Matters is asking everybody a simple question – “What Can You Do?” Talking and planning ahead for dying, death and bereavement is really important. But people also need practical help and support and there are plenty of things we can do to help each other. Further information can by found at www.DyingMatters.org
The Digital Legacy Association will be campaigning and flying the flag for digital asset and digital legacy planning this week in a number of ways.
- Monday 8th May: We launched our new, digital assets and digital leaflet. This is free for hospices, hospitals and carers to download and print from: https://digitallegacyassociation.org/framework/free-inpatient-resource-for-hospices/ If you need any support with this or would like some to be printed and sent to you get in touch.
- Wednesday 10th May: Our digital assets and digital legacy factsheet will be released by Dying Matters during a ‘digital legacy twitter chat’ between 1pm and 2pm. Feel free to contribute to the conversation by using the hashtag #WhatCanYouDo on Twitter.
- Thursday 11th May: We will be speaking and running at workshop at Byw Nawr’s Conference at the Swalec Stadium, Cardiff. We will also have a stand at the conference. Feel free to say “hello” and take some public awareness leaflets away with you.