The
proposal is inspired by similar activities and research with the focus on
exercise and team sports, (Bristol Active Life Project, BALP - http://www.bristol.gov.uk/page/leisure-and-culture/bristol-active-life-project-balp). The emphasis is on applying a similar
methodology to peer support networks. Web/Computer networks would be the basis
for improvement and development of peer support service user networks.
There is
a role for professionally run peer support, though there are arguments against
this :-
‘Professionalizing peer support risks reducing its effectiveness
TogetherUK Anne Beales looks at how to keep it user-led - http://www.together-uk.org/new-charity-report-reveals-adoption-of-peer-support-by-mental-health-services-poses-threat-to-grassroots-ethos-and-survival/ - Charity report reveals: adoption
of ‘peer support’ by mental health services poses threat to grassroots ethos
and survival ‘
‘Peer
support has existed amongst service users for many years but grew in strength
as an antidote to the mental health system which many had experienced as
negative and restrictive. It has also become a lifeline for people from
marginalised groups who have traditionally found it difficult to access
mainstream services.’ ... it is vital a framework is developed that supports its
grassroots ethos and preserves its user-led heritage.’
This
proposal argues for provision of an intermediate step towards digital inclusion
of mental health sufferers by provision of a ‘Walled Garden’ peer support
network for sharing help and advice. This is necessary because there are
advantages and disadvantages for more open access peer networking systems.
Advantages
of Twitter/Facebook
·
Facebook
helps depression: Looking at old photos 'can help treat mental health problems'
- http://metro.co.uk/2013/03/19/looking-at-old-facebook-photos-can-help-treat-mental-health-problems-3548235/ via @MetroUK - Portsmouth University
·
Trawling
through your own Facebook pictures could be good for your mental health - Home
News - UK - The Independent - http://www.independent.co.uk/news/uk/home-news/trawling-through-your-own-facebook-pictures-could-be-good-for-your-mental-health-8538823.html
·
New
research discovers emergence of Twitter 'tribes' - http://www.rhul.ac.uk/aboutus/newsandevents/news/newsarticles/newresearchdiscoverstheemergenceoftwittertribes.aspx - Royal Holloway collaboration with Princeton
University 14 March
Disadvantages
of Twitter/Facebook
·
Trolling
·
Arguments
·
Irrelevance
·
Overcomplicated
interfaces
·
General public/publicity
· Advertising
- can worsen mental health by causing vulnerable people to buy things they do
not want
· Lack of confidentiality,
e.g. stigma and fear of being found prematurely fit for work/work related
activities
All of the above can worsen mental
health symptoms.
Peer
Support Network
Shelter/Walled
garden metaphor
The
common thread to computing research, links to charities and campaigns and the
peer support network to be created is to ask people what they need! Not tell
them what they must put up with. The user led/user driven aspect of this is to
involve those taking part in the peer support network fully in its design.
The peer
support forum network would be designed to be private to its members, and the
emphasis would be on simplicity and accessibility. This is important because
simplicity is the best way to ensure accessibility to those with different
needs and illnesses. Further accessibility would be improved by use of open
standards methods so as to make the network available to the maximum possible
range of devices.The privacy of the forum and caution in rate of growth would deal with the above negatives and dangers of networks I mentioned in the disadvantages of directly applying Twitter and Facebook. This approach to safety and wellbeing of users by risk free involvement is often called a ‘sandpit’ in computing, a metaphor for being enabled to play with the technology and decide how to use it, without any worries.
Increasing numbers of people previously digitally excluded now use the Internet, a further trend is people becoming more savvy, using smart phones and iPads as well as computers. Digital inclusion of mental health patients can be encouraged by accelerating this process, within a safe environment. Assurance is needed that people posting on the site are considerate and careful, if someone wants help with a mental Health issue, we want the responder to be constructive, not destructive. If someone’s post is not appropriate this needs to be moderated carefully via a person/people and technology in a diplomatic and sympathetic way. Because as well as preventing the post from reaching anyone it could harm, we need to avoid discouragement and harm to the person posting whose mental health condition may cause difficulties in their judging what is or is not appropriate.
An excellent example of a peer support resource is this from Bristol University students who talk of their mental health issues and solutions :-
Looking
after your mate: University of Bristol students & Mental health - http://www.youtube.com/watch?v=drYW-BvUV3Q - Video-Feb 2013 experiences of mental health.
Final Stage of research – Education Provision
Protected
environment for learning
The final
stage of the research would be to improve mental health through both online and
personally guided learning. This would be to demonstrate to mental health
patients that education is not just something that is undertaken once symptoms
have eased.
In my own
field of computing research and education, these are examples of where
computing education can strengthen and clarify thinking, problem solving and
ability to achieve goals :-
Tom Armitage: The Coded World - Radio 4 available online - http://www.bbc.co.uk/programmes/b01pg54z - Computer code frees us to think in
new ways.
BBC News - Viewpoint: Computer code frees us to think in new
ways - http://bbc.in/RhQJB8 - "learning to code" - a
hot topic in the media.
I believe that collaboration with
educationalists and mental health experts could expand the benefits of
education to a wider subject area.
Background
to this proposal
This
research would follow on from user driven research I undertook in 10 years as a
researcher and for my PhD, main references below :-
My PhD thesis on University Repository at http://eprints.uwe.ac.uk/17918/
User driven modelling: Visualisation & systematic interaction for end-user
programming.Journal paper JVLC subscription required http://www.sciencedirect.com/science/article/pii/S1045926X12000572 - 'User-Driven Modelling: Visualisation & Systematic Interaction for end-user programming' - open access - http://eprints.uwe.ac.uk/17817/
Related Research
Some organisers of peer review networks, presentations, magazines/twitte
‘BPD FFS Sue Sibbald - https://twitter.com/@bpdffs - ‘Campaigning and Training for People with Borderline Personality Disorder.’Shirley Ayres – ‘I work with innovative organisations to develop communication & digital engagement strategies which use technology & social media for social good.’
https://twitter.com/@shirleyayres - ‘Our trust it's the patients
who run the feedback channels, they manage it ask the questions patient
leaders.’
‘Mark
Brown edits One in Four, England's only national mental health and wellbeing
magazine written by people who experience mental health difficulties.’ - https://twitter.com/@MarkOneinFour - ‘Lead on ideas about how to do
things better for people, sometimes just simple things, and then implement them.’
Depression
Community New York @depressionpage ‘Connect and discuss experiences dealing
with mental illnesses and share coping mechanisms in the hopes of helping...’ http://www.allblackclothes.com/ - https://twitter.com/depressionpage
BlackDogTribe.com
- https://twitter.com/FollowBDT - ‘Online community set up by
@Rubywax, the mother of Black Dog Tribe, for anyone affected by mental
illness.’- http://www.facebook.com/BlackDogTribe - http://www.blackdogtribe.com
Nursewithglasses
- https://twitter.com/nurse_w_glasses - Official Twitter Page of a
Community Mental Health Nurse on a mission to improve Psychiatry Worldwide,
Speaker, Winner Twental Health Awards in nursing 2012 - http://20commandments.blogspot.nl/2012/04/20-commandments-for-mental-health.html
Jim
Paterson - Google "Big White Wall" MOD funded mental health website -
http://www.bigwhitewall.com/ - In Wales we also have a number
of Facebook based self help groups for PTSD
Project:
PROFIT: Prevention of Falls using IT - http://www.zonmw.nl/nl/projecten/project-detail/profit-prevention-of-falls-using-it/samenvatting/ - PROFIT’s main objective role of ICT in
supporting Disease Management. Most relevant to me is Objective
3.:- "How to design a demand-driven process-based usable website to
empower patients? This will contribute to our knowledge of designing websites
for special groups and understand barriers and acceptance issues."
Mental Health Chat - #MHchat is an open access community & Knowledge
Hub (http://mhchat.com ) Join+Share your
#MentalHealth views & insights every Wednesday 8:00 PM UTC @MHchat
BBC News - Preventing bipolar relapse with web
therapy http://bbc.in/10aGUE0 - Research into web therapy carried out at
Lancaster University
Information and Systems approach to improving mental health services
BCS
(British Computer Society) - Working together informatics professionals and
clinicians can transform healthcare delivery - 22 March 2013 - "Now is the
time for a step change in the way technology can help deliver healthcare
according to Dr Justin Whatling, Chair of BCS Health, who speaks in a new
online video interview ahead of the forthcoming HC2013 healthcare conference which
the Institute organises." - http://www.bcs.org/content/conWebDoc/50195 - Video
Interview - http://www.bcs.org/content/conWebDoc/50194
BCS -
IT Now magazine - Changing behaviour through information -
http://www.bcs.org/content/conWebDoc/50218 - Dr Justin Whatling, Chair of BCS
Health and Dr Wai Keong Wong - The
role of information and technology to support individuals in adopting a healthy
lifestyle, reducing their health risk or managing their long-term condition is
a topic that needs to be addressed.
Preparing the NHS for an information revolution
BCS report on the NHS Information Revolution
consultation on proposals - http://www.bcs.org/upload/pdf/liberating-the-nhs.pdf
Department of Health
The power of information
Putting all of us in control of the health and
care information we need
http://informationstrategy.dh.gov.uk/
Everyone counts: Planning for Patients 2013/14
Everyone Counts: Planning for Patients 2013/14
outlines the incentives and levers that will be used to improve services from
April 2013, the first year of the new NHS, where improvement is driven by
clinical commissioners.
http://www.england.nhs.uk/everyonecounts/
I am
broadening my research. My PhD was applicable outside of aerospace also. Then
I've adjusted according to the crises and opportunities that have been coming
my way. The User-Driven and End-User parts of my research apply well to include
those digitally excluded. I'm also hedging my bets that my voluntary
opportunities may eventually lead to first clerical/computing opportunities
within the NHS and eventually NHS Informatics (computing).
New Role - Research Volunteer NHS AWP I’m
involved as Academic, Service User, Patient and Public Participation adviser.
I’m training in mental health and exercise funding bid writing. The funding bid
is for pilot study about effects of exercise and team activities on mental
health.I'm at an early stage of developing research into improving mental health through sheltered peer support forums to improve mental health and mitigate digital exclusion.
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