I was asked to gather a group of people together in Leeds, to talk with my local Health and Wellbeing Board (HWB) members about how digital and social media could help them support the population in meeting health outcomes.
Why did the Health and Wellbeing Board want to know how to use Social and Digital Media?
The Health and Wellbeing Board were making visits to many other areas of the sector such as the statutory sector and the voluntary sector, so they were interested in the voices of people with direct lived experience of services, or people offering innovative solutions in this space, whose voices might be drowned out by the big players in a shared event. I thought it was a great example of the local commissioning structure doing something a little bit different: looking past the structural advantages the big players have in terms of staffing, resources, funding etc towards more creative, innovative, bottom-up suggestions, ideas and products that can help our city meet commissioning needs after April next year when the change from PCT commissioning to CCG commissioning rolls out.
I was able to get the wonderful people at Leeds Met Business Services to donate the space for the meeting (Thank you to Katie of QU2 and Old Broadcasting House who arranged this), and set up a free event on Eventbrite to handle the registration. Because of my experience in organising the Digital Health Conference and Hack in Leeds last June, I already had a great list of people who were interested and engaged with these issues, who represented a cross-section of our health and social care systems. I sent invites to all of the attendees and also Tweeted about the event, to ensure that people were aware of this opportunity and able to come.
We had a great response from people in Leeds, and it was a shame to dissuade people from further afield and from the statutory sector who were keen to come. I was sure they all had great insights to share, but that it was important to stick to the brief and to provide a small and safe group for people to express their thoughts without feeling intimidated by representatives from services that are still experienced by some people as oppressive.
Who came to the Consultation?
What immediately struck me was the combined expertise gathered in the room. Patients, social care users, carers, workers, business owners: many people with overlapping identities in several of these roles in our health and social care system. The people who came all had great insight to share with the local commissioners and were really grateful for the opportunity to put their views across. So often, I believe we can miss out on a lot of the social capital and insight of the population most impacted by our decisions, by making these decisions behind closed doors before running “engagement” events to communicate decisions already made. In the words of the disability movement, “Nothing about us, without us” should be the maxim when we’re looking at such incredible financial and cultural challenges as we are at the moment in health and social care.
Summarising the discussion that ranged over several hours would be very difficult to do, but we kept notes on our trusty Flipchart throughout the event, and I’m happy to share them now with you (and after receiving permission from the entire group to share our results in this way).
- People with disabilities and long term conditions are already using digital and social media to support them and to help them maintain or improve their health (Malby and Mervyn, 2012). They are doing this independently and “under-the radar” of services, because services are not set up to accommodate or encourage this. The irony is that internet use is seen on care planning documentation throughout Leeds to be considered a luxury item, not an essential for planning care and accessing our community; this has to change for the planned changes to be possible.
- People with disabilities and long term conditions are less likely to use the internet than other groups (Dutton and Blank, 2011). We suppose that part of this is due to a lack of appropriate training and access to computers, software, and smartphones that are appropriate to their needs. We would like to survey the populations of people receiving social care, carers, the socially isolated elderly etc. in Leeds, in order to target any interventions to this group.
- We consider that building capacity within this population to use digital technology could be considered a priority area. Access to information and skills training sessions, through libraries, community groups, mobile libraries, and access to useful directories of apps and software, and information about how to access funding for computers and online access are identified as important ways to support the population of Leeds to utilise digital and social media solutions. Perhaps there is a partnership opportunity with community development work such as Go On Leeds, or the Leeds Social Media Surgeries, or community groups such as the LS14Trust who are all building capacity in this area.
- We recognise the environmental barriers that exclude many of our citizens from taking part in this work. We advise ensuring any training solutions are available with good wheelchair access, are culturally appropriate, and include recommendations of software that can help with accessibility and language difficulties.
- We recognise that many of our elderly relatives are excluded from digital and social media, although the over 55s is the fastest growing group using social media (Dutton and Blank 2011). When planning services to be digital by default, we must remember the digitally excluded through access, skills and through choice. We want to consider social and digital solutions that don’t require computer skills training as part of the mix. An excellent example is Mindings, which can run on cheap android tablets and connect people to their family and friends, without them being required to “click anything”!
- Broadly, we feel the definitions of telehealth and telecare currently in use are too narrow and don’t consider the contribution that disruptive technologies such as digital and social media can play. We believe that solutions incorporating these tools should be recommended alongside what we understand as telecare and telehealth solutions. There may be a training issue for customer facing roles in health and social care services, who may not be equipped to offer the advice that users and carers want. We believe that this should be integrated into the suite of services offered by the planned Assistive Technology Hub in Leeds.
- Some of the digital and social media tools and technologies may be far cheaper to implement than traditional telecare, and may be preferable as non-stigmatising, non-medical pieces of equipment (e.g. smartphones and tablet computers running useful apps).
- The outcomes that we expect to be able to measure to create a sense of the impact of the use of digital and social media solutions include length of hospital stay, number of face-to-face appointments, earlier discharge, better self-management of long term conditions, and patient reported social isolation and quality of life measures. We could also look at measuring for any improvement in the issues identified in the Joint Strategic Needs Assessment for the priority areas for the city.
- We know from work that has been done on innovations like the Big White Wall that significant savings can be expected of digital services supplementing face-to-face treatment. Data from the Big White Wall shows that they saved £370000 for 100 users of the service (Kunzmann, Wong and Hart 2011).
- Anecdotal evidence of local initiatives such as the Leeds Wellbeing Web shows that people find it a useful medium to discuss what influences their wellbeing, and also is a medium through which to learn the digital literacy skills we already identified as important.
- We understand the process of “risk stratification” could be used as a framework to identify priority areas to consider digital and social media interventions within the city, supporting self-management of long term conditions such as obesity and diabetes.
- We would like to contribute to the new integrated Health and Social Care Informatics Board, set up to support commissioning decisions, which we believe might be unaware of many useful digital and social media interventions available on the open market from microproviders and small and medium sized businesses.
- Useful work has already been started to develop apps, e.g. to support people with personal budgets to manage their care rotas- see MyCareTracker, given as an example given by our group.
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|@claireOT||@dominiccampbell will be recommending to HWB today that they support it in #Leeds #sm4hwb (Fri, 12 Oct 2012 07:42:20 +0100)|
|@claireOT||Exciting day today- im off to Medipex, hosting this morning, hosting #sm4hwb this afternoon.(Fri, 12 Oct 2012 08:29:41 +0100)|
|@Acuity_Design||# digital health event is #sm4hwb (Fri, 12 Oct 2012 14:47:53 +0100)|
|@Lucinday||Myself, Andy Harris and @goltonstewart attending a session to discuss how social media can be used for health. #sm4hwb (Fri, 12 Oct 2012 14:51:47 +0100)|
|@Lucinday||Interesting to hear about how the Mindings app can be used to support people with dementia to live at home for longer. #sm4hwb (Fri, 12 Oct 2012 15:09:15 +0100)|
|@Acuity_Design||#sm4hwb issue not app but usability sometimes. http://t.co/wvcfJ5VN #tapcare (Fri, 12 Oct 2012 15:12:07 +0100)|
|@MindingsStu||RT @Lucinday : Interesting to hear about how the Mindings app can be used to support people with dementia to live at home for longer. #sm4hwb (Fri, 12 Oct 2012 15:18:39 +0100)|
|@desktopcarl||RT @Lucinday : Interesting to hear about how the Mindings app can be used to support people with dementia to live at home for longer. #sm4hwb (Fri, 12 Oct 2012 15:19:17 +0100)|
|@Acuity_Design||#sm4hwb user organised #socialcare means inherently ppl won’t turn up in official stats as they bypass systems. #disruption (Fri, 12 Oct 2012 15:23:20 +0100)|
|@ronstrong||At #sm4hwb meeting health and welfare board for Leeds talking about digital health and social media(Fri, 12 Oct 2012 15:24:24 +0100)|
|@Acuity_Design||#sm4hwb provider bias tries so many ways to sound open and helpful. Professionals can’t help it. That’s why reversal of control stuck.(Fri, 12 Oct 2012 15:37:10 +0100)|
|@Acuity_Design||#sm4hwb http://t.co/JLuKZcyg http://t.co/wDvWRmpy robmoriarty http://t.co/nD7aR3hU http://t.co/hZREjMO1 (Fri, 12 Oct 2012 15:59:50 +0100)|
|@GoltonStewart||Fantastic afternoon talking technology with the experts in health. Brain fried now #sm4hwb @claireot http://t.co/hQMLEDxF (Fri, 12 Oct 2012 16:05:42 +0100)|
|@CIHM_Becky||RT @GoltonStewart : Fantastic afternoon talking technology with the experts in health. Brain fried now #sm4hwb @claireot http://t.co/hQMLEDxF (Fri, 12 Oct 2012 16:28:42 +0100)|
|@CIHM_Becky||So look forward to hearing how ideas from #sm4hwb will translate into strategy that allows soc med to thrive(Fri, 12 Oct 2012 16:30:19 +0100)|
|@claireOT||Wow! Great information and ideas shared withHWB today- we have such great resources in #Leeds #sm4hwb (Fri, 12 Oct 2012 17:08:05 +0100)|
|@claireOT||#sm4hwb tweets and blogposts and photos to follow! thanks to Andy Harris, @Lucinday and @GoltonStewart for listening so attentively(Fri, 12 Oct 2012 17:13:01 +0100)|
|@claireOT||RT @GoltonStewart : Fantastic afternoon talking technology with the experts in health. Brain fried now #sm4hwb @claireot http://t.co/hQMLEDxF (Fri, 12 Oct 2012 17:14:23 +0100)|
|@shirleyayres||@GoltonStewart @claireOT love the photo from #sm4hwb ! http://t.co/BkDkDdZZ (Fri, 12 Oct 2012 17:28:25 +0100)|
|@claireOT||@CIHM_Becky was a great day- I have high hopes for some innovative commissioning as a result, great for the whole team in #Leeds #sm4hwb (Fri, 12 Oct 2012 17:47:09 +0100)|
|@claireOT||@shirleyayres you would have loved it- such expertise in the room, great solutions generated #sm4hwb @goltonstewart (Fri, 12 Oct 2012 17:48:08 +0100)|
|@claireOT||@shirleyayres discovered an integrated health and social care informatics board at CCG level, want in on that! #sm4hwb @goltonstewart (Fri, 12 Oct 2012 17:49:27 +0100)|
|@Gemma_Finnegan||RT @claireOT : @shirleyayres discovered an integrated health and social care informatics board at CCG level, want in on that! #sm4hwb @goltonstewart (Fri, 12 Oct 2012 17:51:43 +0100)|
|@nhsleeds||great to finally meet @claireOT brill discussion on how social/digital media can support health & wellbeing board #sm4hwb lots of enthusiasm(Fri, 12 Oct 2012 18:32:35 +0100)|
|@Lucinday||RT @GoltonStewart : Fantastic afternoon talking technology with the experts in health. Brain fried now #sm4hwb @claireot http://t.co/hQMLEDxF (Fri, 12 Oct 2012 21:22:48 +0100)|
|@claireOT||? @RobKTurnbull : Should clinical commissioning groups invest in #telehealth ? | The Nuffield Trust http://t.co/RxiCPvfT #ln ? #sm4hwb (Sat, 13 Oct 2012 08:48:51 +0100)|
|@claireOT||@leedswellweb we gave your project a big shout out at #sm4hwb yesterday @gillvolition @victoriabetton @connect (Sat, 13 Oct 2012 16:57:20 +0100)|
|@claireOT||? @legalaware : This is a short guide to Health and Wellbeing Boards, by the way. http://t.co/N6IIwVQ6? via @living_as_if fao #sm4hwb (Sat, 13 Oct 2012 16:58:10 +0100)|
|@johncbaron||RT @claireOT : @leedswellweb we gave your project a big shout out at #sm4hwb yesterday @gillvolition @victoriabetton @connect (Sat, 13 Oct 2012 17:33:58 +0100)|
|@claireOT||@eclectictaste18 is Rob on here? I want to link him up with a few great Social Care contacts to promote MyCareTracker? #sm4hwb (Sun, 14 Oct 2012 08:05:20 +0100)|
|@claireOT||@eclectictaste18 @robmoriarty @mycaretracker thanks! Rob, meet @shirleyayres and @mindingsstu , great contacts for you #sm4hwb (Sun, 14 Oct 2012 09:52:30 +0100)|
|@claireOT||@CIHM_Becky oh, let me know if you hear any thoughts re #sm4hwb I’m just blogging it on a train, now! @robwebster_lch (Mon, 15 Oct 2012 06:16:32 +0100)|
|@iksan_an||http://t.co/RNgngcfq RT @claireOT @CIHM_Becky oh, let me know if you hear any thoughts re #sm4hwb I’m just blogging it on a train, now! @…(Mon, 15 Oct 2012 06:51:52 +0100)|
|@claireOT||@shirleyayres @anniecoops listened to great presentation from @DrThom yesterday- great online solution to LTC management #sm4hwb (Tue, 16 Oct 2012 09:04:23 +0100)|
|@claireOT||? @culturevultures : Digital a very strong asset #unfold ? < #leeds leading the way with #digihealthcon and #sm4hwb health/digital mashups(Thu, 18 Oct 2012 09:56:13 +0100)|
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Dutton, W.H., Blank, G. (2011) Next Generation Users: The Internet in Britain. Oxford Internet Survey 2011. Oxford Internet Institute, University of Oxford. [Available at http://microsites.oii.ox.ac.uk/oxis/ accessed on 19th October at 18.30]
Kunzmann, R., Wong A., Hart B. (2011) Joining in the Conversation: Social Media and Mental Health Services. NHS Confederation [Avaliable at http://www.nhsconfed.org/Publications/Documents/Joining_the_conversation_161111.pdf Accessed on 18th October at 18.42]
Malby B, Mervyn. (2012) Social Networks: An Additional Brief Literature Review for The Health Foundation. Centre for Innovation in Health Management, Leeds University.
- Casserole Club is a great startup that links people in communities who prepare fresh meals with people who live nearby that would appreciate a homemade hot meal.
- Centre for Independent Living (CIL): offering help with financial independence and the process of managing personal budgets in social care.
- Leeds hosted the first system-wide intervention into health and social care, looking at the uses of digital and social media technology to support the people of Leeds
- The Leeds Expert Patient Programme: promoting excellent self-management of long term conditions, but currently with no digital and social media element- this would be great to see happen.
- Free to Live: offering peer support to people in Leeds
- GoodGym: a great start-up that motivates runners to go out on a weekly run to see their “coach”- a socially isolated individual that lives nearby. The runner then helps with jobs that need doing like sweeping a path and bringing a pint of milk. Groups of runners can be recruited by community groups to work on projects local to them, such as clearing a canal, or litter picking.
- Initiative to promote Digital Inclusion in Leeds
- HANDI Healthcare app development and support. Soon to launch a directory of useful and recommended apps.
- The Leeds Directory: a list of all checked and vetted providers of domestic, personal care and trade services. All our information is available online or by phone/post via our Helpline number. We have several other features on our website, including our Activity Calendar to find what events/activities are going on across Leeds.
- Great format for voluntary and community groups to access expertise donated by social media experts (surgeons) in order to explore how digital and social media tools could help them.
- **Leeds Social Media Surgeries are currently searching for a new venue, must be central to Leeds and must have Wi-Fi**
- leedswellbeingweb.wordpress.com: a group blog discussing how to stay mentally healthy in Leeds.
- Great community development Trust offering a Digital Lounge for residents of LS14 to get online and promote digital literacy.
- Mindings: a great app that enables the connections of people on social media to be shared with friends and relatives who are not connected with social media. Also has elements of self-care, like being informed when a relative has put on their kettle, i.e. is up and about.
- Mycaretracker- an app that helps with care scheduling for people with personal budgets who act as employers and managers of their own care teams. Also provides webinar training to organisations and individuals.
- Rally Round: an application that enables people to share the tasks that need doing with family and friends to enable faster integration of health and social care.
- No live link as yet- my (ClaireOT’s) new digital mental health service enabling people to recover an ordinary life after an episode of mental distress.
- Tapcare.blogspot.co.uk: a great resource that simplifies the process of keeping track of carers and has many other applications.
- Usefulapps.com- a planned suite of apps for service users to manage compliance, keep reminders etc.
- We Are Spartacus and the Spartacus Forum, great supportive spaces for people with disabilities to offer and receive support to others in the same position. Also the Spartiquilt project in Leeds, where we are attempting to create a narrative quilt contemporary disability movement quilt.
Edit: updated information for the Leeds Directory as per the comment left by Lisa Stones below.