Networks for Healing - User Driven Computing for Mental Health Peer Support Networks

This is a proposal for research and implementation of Web-based networks for healing mental health by enabling sharing of help and support. This will be a simple forum system for social networking, protective and friendly. Mental health patients will be involved in the design of this peer support system. The problem this addresses is that a digital by default society causes social exclusion of mental health patients who are often not well digitally connected. This can then worsen their symptoms.

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/

 The information strategy from the Department of Health was published in May 2012. It sets a ten-year framework for transforming information for the NHS, public health and social care. One of the key commitments is that you will be able to view your GP record online by 2015.

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/

 

About Me

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.

Sport and Mental Health Research - Health Grant Funding Workshop

Health Grant Funding Workshop at Buckfast Abbey, Devon today was excellent - National Institute for Health Research - http://www.nihr.ac.uk - Very informative. I'm part of the team involved in applying for funding for mental health research. We had very useful feedback, and it's clear that the funding bid is on track for submission in September or January. It's now down to details. The project would be a 6 month pilot study into the effects of football for people with mental health issues. This project would be led by NHS AWP (Avon and Wiltshire Mental Health Partnership).

My new Research - Mental Health Forums

I attended a research course last Wednesday- ‘An introduction to public involvement in health and social research’ - People and Research South West. This was at University of Bristol presented by Professor David Evans University of the West of England UWE. The course was helpful for a mental health and sport bid. Attendees went over public engagement in this funding bid for investigating the effects of sport and exercise on mental health. I'm part of the team applying for this research funding.

We're going to another funding workshop in Devon on Thursday April 25. All day in Buckfast Abbey run by Research Design Service - South West (RDS-SW) - http://www.rds-sw.nihr.ac.uk/.

I'm writing a proposal for research and implementation of Web-based networks for healing mental health. This is for enabling sharing of help and support.

Networks for Healing - User Driven Computing for Mental Health Peer Support Networks
“This is a proposal for research and implementation of Web-based networks for healing mental health by enabling sharing of help and support. This will be a simple forum system for social networking, protective and friendly. Mental health patients will be involved in the design of this peer support system. The problem this addresses is that a digital by default society causes social exclusion for mental health patients who are often not well digitally connected. This can then worsen their symptoms.

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.”

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).

BBC Technology - The mysterious powers of Microsoft Excel

BBC Technology - The mysterious powers of Microsoft Excel - Colm O'Regan - http://www.bbc.co.uk/news/magazine-22213219

"After two Harvard economists admitted a faulty spreadsheet calculation caused errors in a study used by numerous politicians to support their austerity policies, writer Colm O'Regan pays tribute to the power of Microsoft Excel.

The Reinhart-Rogoff study

• Harvard economists Carmen Reinhart and Kenneth Rogoff wrote in 2010 that a country's output fell substantially as soon as total public debt passed 90% of gross domestic product
• Their paper said that - in 20 advanced economies since 1945 - growth of 3% to 4% collapsed to an average -0.1% at this point. Governments used the findings to support austerity measures
• But University of Massachusetts researchers found coding errors in spreadsheets used in the study. Reinhart and Rogoff admit mistakes but say the research's central point remains valid
• New research says growth only falls to an average of 2.2% and that in some cases it can be higher than in countries with lower debt levels"

BBC News - Reinhart, Rogoff... and Herndon: The student who caught out the profs - By Ruth Alexander

"This week, economists have been astonished to find that a famous academic paper often used to make the case for austerity cuts contains major errors. Another surprise is that the mistakes, by two eminent Harvard professors, were spotted by a student doing his homework."

http://www.bbc.co.uk/news/magazine-22223190

The Open Knowledge Foundation

Reinhart-Rogoff revisited: why we need open data in economics http://blog.okfn.org/2013/04/22/reinhart-rogoff-revisited-why-we-need-open-data-in-economics/ … #opendata #openeconomics

"Another economics scandal made the news last week. Harvard Kennedy School professor Carmen Reinhart and Harvard University professor Kenneth Rogoff argued in their 2010 NBER paper that economic growth slows down when the debt/GDP ratio exceeds the threshold of 90 percent of GDP. These results were also published in one of the most prestigious economics journals – the American Economic Review (AER) – and had a powerful resonance in a period of serious economic and public policy turmoil when governments around the world slashed spending in order to decrease the public deficit and stimulate economic growth."

The Open Knowledge Foundation is a not-for-profit organization founded in 2004 with the aim of promoting #OpenKnowledge and #OpenData in all their forms.
 Global · http://okfn.org

British Computer Society Events - Restoring the world's oldest working digital computer - Raspberry Pi

Restoring the world's oldest working digital computer 15th April

"we still have some availability for tonight's talk on the Harwell Dekatron Computer at the City of Bristol College. All are welcome.
Restoring the world's oldest working digital computer


Start: 15/04/2013 - 19:30

End: 15/04/2013 - 21:00
Speaker: Kevin Murrell
Venue: City of Bristol College
Please register here: https://events.bcs.org/book/563/
7:00pm Refreshments, 7:30pm Main Talk
The recently restored Harwell Dekatron Computer is a typical project conducted by the Computer Conservation Society. Starting with the author's vague memories of the machine being a museum display in the early 1970s, and a chance observation in 2006, the CCS began a project to find the remains of the computer and determine whether it might be restored.
A combination of luck, perseverance and vintage-technology know-how made the project possible, and this 1950s relay and valve computer has now been restored to full working order. It is now on public display and shown working, and is being used again in education with a new generation of programmers.
Kevin Murrell has been a member of the Computer Conservation Society for many years, initially as chair of the DEC working group and now as society secretary. Kevin divides his time between his own business supplying systems to the health service, acting as a trustee to The National Museum of Computing, and in his spare time, still tinkering with his collection of PDP8 mini-computers."

Raspberry Pi Bootcamp 20th April

"This is a reminder about the Raspberry Pi Bootcamp being held at @Bristol in Bristol on Saturday 20th April. This is an excellent chance to learn about the Pi and get kids into computing. It is open from 10.30am to 4.30pm and you will be able to drop in at any time – ENTRY is FREE. Just register at http://bcsbristolbootcamp.eventbrite.com/
 
There are a number of excellent workshops to attend during the day which you can register for too –

Workshops:
·        Logging data to the internet – register at http://rasppisensor20apr13.eventbrite.com/
·        Hardware Interfacing with Multi-Coloured LEDs using the Raspberry Pi – register at http://rasppiled20apr13.eventbrite.com/
·        Learning to use a Pi-Car http://picars20apr13.eventbrite.com/
·        Using your Pi to create the game “Operation” http://opiration20apr13.eventbrite.com/
·        Learning to use to program your Pi-Car http://picarprogramming20apr13.eventbrite.com/
·        Your Raspberry Pi and the real world: Controlling LEDs and buttons via I2C: http://ledviai2c20apr13.eventbrite.com/
·        Remote Access To Your Raspberry Pi: Creating a Home Media Server: http://remoteaccess20apr13.eventbrite.com/
 
Drop in clinics:
·        The MagPi will be on hand offering help with anything Raspberry Pi related: from initial setup to installing and configuring applications, to using the expansion capabilities of the Pi. Drop in when you want to ask questions or to see some demos of some of the latest Raspberry Pi expansion hardware.
We will also have printed issues of The MagPi to view and can help with questions that you may have from reading articles in the magazine.
·        Beginners drop-in from the University of Bristol – you can get some help with using your laptop as a monitor for your Pi (see below)
 
Bringing your own equipment:
You should bring your own Raspberry Pi. We will have some monitors, keyboards and mice available but we suggest you try to bring your own
You can use a laptop as a monitor. The following links show you how to do this
http://pihw.wordpress.com/guides/direct-network-connection
http://www.rasptut.co.uk/files/raspberry-pi-vnc.php "

Summary - Vitae - Charting an entrepreneurial career: how researchers can control their professional destiny April 9th

I'm summarising the excellent research support event I attended -

This post summarises the excellent Vitae event I attended at Bristol University yesterday on entrepreneurial activities related to research. This helped me understand what entrepreneurial activities had already been part of my PhD and work, and inspired me to pursue them further.

Vitae - Charting an entrepreneurial career: how researchers can control their professional destiny- http://www.vitae.ac.uk/researchers/56271-593711/Charting-an-entrepreneurial-career-how-researchers-can-control-their-professional-destiny---Bristol.html - Bristol April 9

The main point of this event is that researchers are already undertaking entrepreneurial activity as part of their studies. Entrepreneurial activity doesn't necessarily involve starting your own business. It can be undertaken within a University, company or organisation.

Research is about solving problems so it was emphasized that it's worth recording and noting when we solve a problem, as this could turn out to be important in future entrepreneurial activities.

The difficulties of deciding when to publish, or when to apply for a patent were discussed, with an emphasis on seeking advice (available in universities).

The overall point was that a lone researcher, or any 1 person is unlikely to have all the skills necessary to be an entrepreneur and this is where advice, co-operation and teamwork is needed.

This recent article was cited as an important and useful guide -

Guardian online - How academics can engage with policy: 10 tips for a better conversation - http://www.guardian.co.uk/higher-education-network/blog/2013/mar/25/academics-policy-engagement-ten-tips
-
'Academics need to look at different ways they can communicate their research to policymakers, says Matthew Goodwin – here's his advice on not wasting their time, or yours'

This free toll helps in creation of a business plane - useful tool for entrepreneurs -downloadable business model canvas http://www.businessmodelgeneration.com/canvas

Academic entrepreneurial activities at Bristol and Cardiff Universities were discussed including a way to create forces that feel like real objects, a high tech learning partnership with Bristol Zoo, and this Cardiff entrepreneurial scheme, that may come to Bristol -

iSolve - http://www.cardiff.ac.uk/racdv/students/i-solve/

'We are now taking registrations of interest for the Winter 2013 iSolve Programme


Please email enterprise@cardiff.ac.uk with the subject “iSolve 2013 Registration” or click here:

Based on a programme developed first at MIT in Boston and then extended to Cambridge University, this exciting concept has now been successfully developed at Cardiff University.

iSolve allows entrepreneurial postgraduates and researchers to work with real inventions in order to determine the best route for their commercialisation. Findings from these teams are then presented to a panel of judges alongside a report.'

Below are Vitae tweets from the day -

From Vitae - https://twitter.com/Vitae_news


@DaveJarm: 'Charting the entrepreneurial career' kicked off @Bristoluni with @s4s and @Vitae_news #ented #vitae13
RT @DaveJarm: Kevin Byron 'from Researcher to Entrepreneur' @Vitae_news @s4s #vitae13 pic.twitter.com/PvxdjpEXQD

RT @DaveJarm: Innovation breakthroughs illustrated via the High Jump... @Vitae_news @s4s #vitae13

From Vitae the South West and Wales Hub - https://twitter.com/VitaeSWWHub

Researchers exploring their enterprising skills at goldney hall Uni of Bristol today with @s4s and #vitae13


Many ways to demonstrate pathways to impact. Key qs who might benefit and how? What methods will you use? #vitae13
Great tip for public engagement- give presentations to Uni of the third age- http://www.u3a.org.uk . #vitae13

Andrew Wray from Uni Bristol up now talking about knowledge exchange. Foster 'rolling conversations' w potential partners #vitae13

'Tangents' can prove to be v beneficial in knowledge ex.Arts pgrs working w entrepreneurs Bristol Uni+Bristol zoo
thoughtden.co.uk/zoom

Great panel of researchers who are budding entrepreneurs #vitae13

Kevin Byron talking about the path from researcher to entrepreneur.'innovation is a tool of the entrepreneur 'Peter Drucker #vitae13

Kevin byron using sigmoid curve of world high jump record to illustrate how ideas progress. #vitae13

When solving lesser probs as pt of a larger research project ask who else? Where else? #vitae13
Draw on your personal history of ideas and innovation may follow #vitae13

useful tool for entrepreneurs -downloadable business model canvas http://www.businessmodelgeneration.com/canvas #vitae13