End-of-Life Care Wiki Page How is the Wiki page for end-of-life care being used? Why did we use the Wiki page? How has the experience been? What are the future plans? Good afternoon everyone, my name is Jean, and I’m currently working as an intern with Christopher and Yvonne at the Governance and Economy cluster at IPS. We’ve been researching on end-of-life care in Singapore, as this was identified in a previous research study as a key issue to be addressed as Singapore’s population ages. As such, our project hopes to draw out the values and sociocultural attitudes among Singaporeans that drive our perceptions toward end-of-life care, and release a paper by the end of this year that will help to kick start conversations in the end-of-life care space. I’ll be sharing how the wiki page for end-of-life care has been used so far, and hopefully this would provide some insight into how your organisations may also use the platform in a similar manner. Jean Lor JY Institute of Policy Studies 19 June 2018

How is the Wiki page being used? Three pages: Resource Directory Needs Assessment White Paper Consolidate existing research & information Discussion platform with Working Group We started using the wiki page as a tool for two purposes: firstly, to help us consolidate existing research and information; secondly, as a platform for discussion with Working Group participants in the end-of-life care space. There are three pages on the Wiki, and I will go through each one briefly.

1. Resource Directory The first page is the resource directory, where I have consolidated information from different organisations in the end-of-life care space, such as hospices, nursing homes, government agencies and hospitals. As you can see, there is also information about the instruments that people can use for end-of-life care planning, such as the Advance Medical Directive, Lasting Power of Attorney and Advance Care Planning.

2. Needs Assessment The second page is the needs assessment page. This page is based on a needs assessment that Dr Lee had done previously, and so what we made two big changes: the first change was to include more updated information and other research done previously in Singapore and around the world, the second change was to reorganise the various needs into the sections that we were focusing more on for our project, such as Physiological Aspects, Financing Considerations and Family, Society and Polity.

3. White Paper [Private Access] The previous two pages of Resource Directory and Needs Assessment are open to viewing by the public, so anyone can have access to the repository of information available. However, for third page called the White Paper, we chose to make access to it private only to those in the Working Group for our research project. We made it private because the paper is still work in progress, so some confidentiality would be good. However, when the paper is finally released to public, we hope to also share our research with more people on this wiki page as well. [Private Access]

Why did we use the Wiki page? Allows for consolidation of research and information Information accessible for viewing to all, but editable only by members with accounts Now that I’ve explained how we have used the Wiki page so far, I think it would be good to share more about why we chose to use the Wiki page, or the advantages we found in using the page. The first advantage is that the Wiki page is great as a platform to consolidate existing research and information about the end-of-life space. There were a lot of great research being done, and so this wiki page could help to pool all of this research together. I thought this wiki page was an interesting effort to improve information sharing among organisations within the same social sector, and also across different social sectors in Singapore. The other advantage of this Wiki page is that the pages are open to public, but only members with accounts can make edits. As such, the information on the Resource Directory and Needs Assessment is accessible to everyone, and every single person can take a look and benefit from it. Yet at the same time, the information is protected because only those with accounts can log in to make edits. This ensures that the information is largely accurate yet allows for information sharing to take place with individuals outside the end-of-life care space.

How has the experience been? Difficult to get the involvement of other organisations Responsiveness has helped the ease of use - + When we first started using the wiki page, the idea was for me as an intern to first go into the wiki page and populate it with as much research and information that I could find and consolidate them onto the wiki page. After that, we would then go to the organisations in the end-of-life care space and bring them on board to contribute to the page. However, we realised that it is difficult to get organisations to be more involved in contributing to this page, and I would hazard a guess at two reasons. The first reason is the unsurprising reason that many of the people in these organisations are very busy with many other projects. One of the Working Group members who we met recently also shared that her lack of contribution to the wiki page was NOT due to a lack of interest, but rather that she was already very busy with other projects. And this is an understandable reason. The other reason comes from some personal reflection. I realise that now that the end of life wiki page has become so populated with so much information, as you saw briefly in the screenshots earlier, it can be quite overwhelming for someone who has not looked at the page previously. If I can draw a quick analogy, I have been like a gardener tending for this garden, and it is difficult for someone new to come into the garden and plant their new plants without first getting a bearing of the garden first. As such, it can be quite inhibitive to organic participation from others in the end of life care space. Perhaps a blank slate, or at least an emptier one, should have been passed onto the organisations first, and this may have been more beneficial for organic participation. Nevertheless, we are very grateful to Joe who has been very responsive and supportive in our use of the end-of-life care wiki page. Joe helped us to restrict the access for the White Paper to the Working Group members, as I shared earlier. He also made changes to the page to make it easier to edit, and continues to be very responsive when we face issues on the page. Thanks Joe

What are the future plans? Updating the White Paper page with a draft to get feedback from other organisations Finding another contributor from within the end-of-life care space To conclude, I will briefly outline our future plans for the Wiki page. In the coming months as we start writing a draft for the White Paper, we will be ramping up the use of the wiki by updating any changes in the draft for other Working Group members to look at and give feedback and comments or make changes as they deem fit. Also, the nature of the wiki page is such that it will require the constant updating of information, especially since there’s constantly so much research and campaigns being done. As such, it would be good if someone from within the end-of-life care space can be the main contributor of the page, because this person would then have more on-the-ground knowledge and updates, and have more ownership over the page. I hope this short sharing has been beneficial to you, please let me know if you have any questions. Thank you!