Caregiving and dementia/Outline

Establishment of a Dementia Care Wiki: Project Outline

Executive summary edit

The Dementia Care Wiki project aims to provide information about key aspects of psycho-social care for people with dementia. It is recommended that the project utilise the Wikimedia Foundation platform. In this way, the project can capitalise on pre-existing resources and functionality, and can contribute additional free and open dementia-care resources for national and international benefit.

A Day 0 wiki will be established (Jan 2012), followed by intensive content development and mid-project review (Mar 2012), leading to project launch May/June 2012 and final report with sustainability recommendations (June 2012).

Deliverables edit

The Dementia Care Wiki project is structured into Phase 1 (30/11/2011) and Phase 2. (30/6/2012).

Phase 1: Outline edit

Phase 1 describes the vision, wiki platform, budget, plan, and resources. This includes development and provision of:

  1. Recommendations for wiki platform
    1. Options
    2. Criteria
    3. Recommendation and implications
  2. Project budget for the next stage of wiki development
    1. Time allocation to phases/steps
    2. Travel
    3. Training resources
  3. Project plan and timeframe for the next stage of wiki development
    1. Phases/steps
    2. Milestones
  4. Outline of resources required
    1. Training logistics and resources

Phase 2: Implementation edit

Phase 2 implements the wiki set-up, engages in strategic planning, and uploads content so that a usable and useful site for stakeholders and the public is available by 30/6/2012. This includes, development and provision of:

  1. A wiki-based platform for national dissemination of dementia training-related materials
  2. Integration of wiki project into broader strategic planning (e.g., with national website developers)
  3. Facilitation of content upload:
    1. Day 0 site creation (early 2012)
    2. Mid-project site for feedback (Mar-April 2012)
    3. Version 2 (mid-2012 - ready for wider use and feedback)
  4. Weekly meetings to plan and review project progress

Wiki platform edit

A wiki is a type of website that is easily editable, which makes is ideal for crowd-sourcing information. The most widely known and used wiki is Wikipedia, a publically-edited, free, online encyclopedia. However, there are many other wiki projects and wiki software platforms.

Tables 1 and 2 summarise the wiki-platform options and their pros and cons.

Table 1.Recommended self-hosted and externally-hosted commercial and free and open wiki platform software

Self-hosted Externally hosted
Commercial software Confluence (commonly used by government departments in Australia - Pricing[1]scaleable[2]by[3]number[4]of[5]editors) - Wikispaces (allows the creation of wiki content and communities - $1000/year) -
Free and open software Mediawiki (the software that runs the Wikimedia Projects - free and open source) - Wikimedia Projects (Wikipedia, Wikiversity, Wiki Commons, etc. - free and open) -

Table 2. Pros and cons of self-hosted versus externally-hosted wiki platforms (in a nutshell)

Self-hosted Externally hosted
Pros (Advantages) Complete control over look/feel and over permissions (who can view and edit)

Complete control over community editing policies and practices

Capitalise on pre-existing content

Contribute new content Engage local, national, and international communities

Translation community available for different languages

Cons (Disadvantages) High short- & long-term cost and organisational responsibility

Long-term lead time needed to get platform operational

High risk of failing to engage an editing community

Limited control over look/feel and permissions (who can view and edit)

Limited control over community editing policies and practices

Table 2 depicts the choice for wiki platform as between:

  1. Externally-hosted using the Wikimedia Foundation free and open wiki platforms which cost little, offer much pre-existing content and support via engaged community, but with potential risks around lack of complete control over editing of content.
  2. Self-hosted platforms which allow total control over content, look/feel and who can access and edit, but relatively high cost, responsibility, and time to set up, develop, and sustain.

In consideration of the suggested wiki platform options, the following criteria suggest additional considerations for the Dementia Care Wiki project choice wiki platform:

  1. Hosting and management costs
    1. Short-term: How much does it cost to get started?
    2. Long-term: How much does it cost to sustain?
  2. Sustainability of content and community
    1. How will knowledge be updated?
    2. How will a dementia care wiki editing community establish critical mass?
  3. Access/Permissions
    1. Who can view?
    2. Who can edit?
    3. Note that all content on WMF Projects is publically viewable and editable.
  4. Licensing
    1. Who owns the content copyright?
    2. Creative Commons or Public Domain licensing help to maximise knowledge transfer and is now a federal standard - see Australian[6]Government[7]sets[8]default[9]copyright[10]to[11]Creative[12]Commons[13]by[14]Attribution. All rights reserved and other restricted licenses hamper knowledge transfer.
    3. Creative Commons Attribution is main recommended license for Wikimedia Projects. Wikimedia projects require that all contributed content is openly licensed.
    4. Importability/Exportability - Ease of importing and exporting content?
  5. Editing and usability
    1. Usability for viewers
    2. Usability for editors
    3. Technical capabilities and functionality - What can/can’t be done?
  6. Governance
    1. Content is subject to the host’s terms of use
    2. Content is subject to the host communities’ editing policies and practices
  7. Strategic integration
    1. What Interaction and integration of the wiki platform is desired with existing websites, social media and electronic communication networks used by stakeholders?
  8. Exit strategy
    1. What if things change?
    2. What are the worst case scenarios?

For more information, see ComparisonComparison of wiki softwareofComparison of wiki softwarewikiComparison of wiki softwaresoftware (Wikipedia).

Wikimedia Foundation edit

The Dementia Care Wiki project could be developed using the ecology of Wikimedia Projects. The Wikimedia Foundation (WMF) is an American, non-profit, educational organisation, with an Australian chapter. The Wikimedia projects reside on hosted servers and use Mediawiki software. The Wikimedia projects include, but are not limited to:

  1. Wikipedia (encyclopedic articles),
  2. Wikiversity (learning materials and activities),
  3. Wikibooks (new books),
  4. Wiktionary (dictionary),
  5. Wikinews (news), and
  6. Wikisource (previously published books)
  7. Wikicommons (files, including images, audio, and video).
  8. Full list of projects

A key advantage of partnering with the Wikimedia projects is that the Dementia Care Wiki project can build on, and contribute further to, pre-existing resources, such as:

  1. Wikipedia
    1. Dementia
    2. Caregiving and dementia
    3. Alzheimer's disease
  2. Wikiversity
    1. Dementia
  3. Wikibooks
    1. Dementia (search)
  4. Wiktionary
    1. Dementia
  5. Wikinews
    1. Dementia (search)
  6. Wikisource
    1. Dementia (search)
  7. Wikicommons
    1. Dementia (search)

Perusal of these links will illustrate that whilst some useful information about dementia and dementia care exists within the Wikimedia projects, that these resources are also in need of further development. Priority areas for dementia care training in Australia could be fruitfully targetted.

A partnership with the WMF could also be advantageous to the extent that the Dementia Care Wiki project aligns with the WMF mission:

“The mission of the Wikimedia[15]Foundation is to empower and engage people around the world to collect and develop educational content under aen:free contentfreeen:free contentlicense or in the public domain, and to disseminate it effectively and globally.

In collaboration with a[16]network[17]of[18]chapters, the Foundation provides the essential infrastructure and an organizational framework for the support and development of multilingual wiki[19]projects and other endeavors which serve this mission. The Foundation will make and keep useful information from its projects available on the Interneten:gratisfreeen:gratisofen:gratischarge, in perpetuity.”

It is possible to pursue the project informally (the wiki platforms are open for use) or to formally partner with the WMF by working with the local Australian chapter:

“The mission of Wikimedia Australia is to support the Mission of the Wikimedia Foundation in Australia in accordance with the principle of subsidiarity.

We will undertake outreach activities, develop resources and build systems that empower and engage people to collect, develop, share and promote Free Cultural Works. In recognition of Australia's role in the Asia-Pacific region, we will assist in building the capacity of the Wikimedia and Free Culture movements internationally.”[1]

As outlined above, and based on Dementia Care Wiki project discussions to date, the recommendation for a Dementia Care Wiki platform is to utilise the Wikimedia Project platform and to thereby build on and further develop existing free and open resources and editing community.

Dementia care wiki overview edit

Vision edit

The Dementia Care Wiki project seeks to provide a platform for information and training materials about psycho-social aspects of care for people with dementia from a wide range of disciplines including nursing, psychology, architecture, interior design, exercise physiology and dietetics.

Aims edit

The aims of the Dementia Care Wiki project are to:

  1. Provide a growing body of current information on many aspects of the care of people with dementia.
  2. Contribute to the establishment of the community of interest essential to all knowledge transfer strategies by involving many practitioners in providing, reading, monitoring and using current information.
  3. Provide international access to the view of Australian practitioners.

Background[2] edit

The Dementia Care Wiki project was inspired by a Wikiversity[20]page submitted as one of the 100+ entries in the NSW/ACT DTSC sponsored University of Canberra essay competition. It illustrates the quality, ease of use and attractiveness of this form of information dissemination. The intention is to build on this to establish a wiki containing evidence based information on a wide variety of topics related to the care of people with dementia.

Health-related wikis are emerging as sources of information (e.g,. cancer, depression and anxiety, and broadly-based wikis like ageing well in the UK). There is, however, no existing dementia wiki project which holds general information on dementia and is aimed at supporting people with dementia and their carers.

The Dementia Care Wiki project is a priority of the NSW/ACT Dementia Training Study Centre (DTSC), which is part of the School of Nursing, Midwifery and Indigenous Health at the University of Wollongong (UOW). The NSW/ACT DTSC is led by Professor Richard Fleming, and is responsible for three national priority areas: 1) Knowledge transfer; 2) Environmental design and assistive technology and 3) Nursing.

The Dementia Care Wiki is a Knowledge Transfer project which aims to develop new ways of bringing researchers, and the results of their work, into contact with practitioners so that practitioners receive timely advice on new developments and researchers can hear about the needs of practitioners. Print media, websites, social media and events such as mini-conferences will be used to achieve this.

More generally, the aim of the DTSCs is to improve the quality of care and support provided to people living with dementia and their families through education of the dementia care workforce and the transfer of knowledge into practice.[3]

Content development edit

Scope edit

Based on the vision, the scope of the Dementia Care Wiki is information and training materials about psycho-social care of people with dementia. The wiki provides information from a wide range of disciplines including nursing, psychology, architecture, interior design, exercise physiology, and dietetics.

In addition, particular emphasis will be placed on fostering and communicating new knowledge from the researcher to the practitioner and on providing opportunities for practitioners to identify priority areas for research.

Here are some example projects of roughly equivalent size, scope, etc.:

  1. Motivation and emotion - - Lectures, tutorials, and collaboratively-authored book (3rd year undergraduate psychology unit at University of Canberra)
  2. The history of the paralympic movement in Australia - - An official history of the paralympic movement in Australia which is being developed through Wikipedia, Wiki Commons, and Wikiversity
  3. Wisdem: Understanding Dementia. Improving quality of life - - Global website project sharing knowledge about nonpharmacological approaches to enabling more people live well with dementia and connecting communities affected by dementia. The site uses CC-A-NC licensing which means that the content cannot be re-used on the Wikimedia Foundation Platform without seeking further permission. Notable pages include:
    1. Mission -
    2. Key areas -
    3. Blog, Twitter, Facebook, Video etc.
    4. No discussion forum, no public editing, contributions are vetted
  4. Dementia Enabling Environments Project (DEEP) - work in progress

Currently, there is no open-platform for developing and sharing dementia care information. Thus, the Dementia Care Wiki project targets this gap.

Format edit

Wiki content can be formatted as text, figures, tables, images, audio, and video, however the content must be in an open format in order to be uploaded to WMF servers. Pre-existing content is often stored in proprietary formats (e.g., .doc, .xls, .ppt, .avi, .mov, .flv) and thus requires conversion to open formats.

Licensing edit

Content on WMF servers must be placed into the public domain or openly-licensed to allow free re-use by others, such as through Creative Commons Attribution licensing. Pre-existing content is often copyright restricted (e.g., all rights reserved) and thus requires negotiation to request that the copyright owner re-release under a less restrictive terms of usage.

Day 0 wiki edit

Early in Phase 2, a simple “Day 0” Dementia Care Wiki project page will be established. This will allow low-level launch of a working site. At Day 0, content will be minimal, but a basic structure will be provided. What should be provided initially? Considerations include:

  1. Structure:
    1. Start page:
      1. Use a simple start page structure, branching off to other places/content
      2. ~ 3-5 things that people might want to do
    2. Priority/demo areas?
      1. Environmental design
      2. Knowledge transfer
      3. Nursing
  2. Content
    1. Explain scope
    2. Recommended existing resource URLs
    3. Help documentation (wiki training - how to use the wiki)
    4. Discussion (community hub for dementia care wiki editors)
    5. Plan with milestones & progress indicators

Sustainability plan edit

A sustainability plan for the wiki will be developed as part of Phase 2. This would involve Phase 3 (Engagement) which aims to engage community contributions to the Dementia Care Wiki via:

  1. Ongoing wiki content development
  2. Wiki champion training program to facilitate researchers and other stakeholders to actively contribute to the wiki.
  3. Integration of wiki with dementia training communities and social media communication platforms.

Budget edit

The budget represents 80 hours work @ $100/hour, which is $8,000 plus $2,000 (20%) Faculty of Health, University of Canberra management fee (Total: $10,000). Any travel time and cost would be additional at standard[21]UC[22]travel[23]rates.

  1. $3,000 - Phase 1 - Establishment of a Dementia Care Wiki: Initiation and Planning Phase (24 hours)
    1. Face to face and phone meetings (5 hours)
    2. Preparation of project outline (19 hours)
  2. $7,000 - Phase 2 - Implementation (56 hours)
    1. Set up wiki platform (4 hours)
      1. Write detailed description of the platform
      2. Project naming and nomenclature
      3. Agree on URL site location(s)
      4. Liason with host e.g., Wikimedia Foundation Australian Chapter
    2. Day 0 structure and content (8 hours)
      1. Wikify initial content
      2. Set up initial pages
    3. Mid-project development (20 hours)
      1. Create exemplar content
      2. Gather review comments
    4. Final project development (20 hours)
      1. Create, edit, and wikify content
    5. Evaluation, final report, and sustainability plan (4 hours)

Timeline edit

Task Delivery
Phase 1 - Outline 30 November 2011
Wiki planning meeting - UC/UoW TBA January 2012
Day 0 site - wiki up and running 30 January 2012
Weekly wiki planning and review meetings Feb-June 2012
Mid-project review 30 March 2012
Final project launch May/June 2012
Final report - A way forward 30 June 2012
  2. This background is largely derived from the project contract.