Refinement Feedback Process

Refinement Feedback Process:

An email was sent to members of our functional planning committee, which was assembled last year to help us envision what the elements of an International Centre on Dignity and Palliative Care might look. This group 30 passionate, motivated and dedicated individuals - comprised of healthcare administrators, healthcare professionals, patients and bereaved family members - were all sent the prototype of the OpenIDEO User Experience Map and the What to Prototype documents, along with a cover letter (see attachments), explaining the proposal and asking for their input.

Here is what they had to say!

This is an excellent idea. Compiling designs and finding what works well, and what to avoid, and opening it up for the world to collaborate is very important. I'm sure it would assist in more projects that focus on quality end-of-life care, and cut down on the tremendous amount of effort that goes into discovering the best way to proceed.I don't have a lot to offer to this, but I do approve.

-Bereaved parent

Thanks for giving me the chance to review this idea. I think this idea has great merit and potential.I have been dealing with some aspects of the planned renovations to the Alzheimer units, and it is frustrating and difficult to locate potential alternatives.An initial difficulty is the lack of an easy, single access site to check. An excellent librarian has done several literature searches, but not everyone has such a luxury. So use of the Virtual Hospice is a good idea. What will be important is making sure those who can use the info know to come to Virtual Hospice site.

Also, for me the greatest problem has been to determine which features have been empirically proven to have been beneficial. Re. Alzheimer’s disease, few studies exist, and only on some select aspects. There is much info from producers of products, with the rhetoric of how great the product is, but no credible evidence. If your site could also provide some indication of the quality of evidence for the design ideas, after implementation, it may be useful to some. But that's me--not the greatest of visionaries, but tired of unexamined hype and b.s., looking for the evidence of effectiveness, beyond testimonials.I expect you will get some great ideas from others, and hope this little bit will be of some help. By the way--I found the specific example helpful, and a bit confused by the more generic pdf.

- Palliative care administrator and bereaved family member

WOW - quite the 'summer reading' project! I have more questions than ideas -

1. Who pays for the use of the 'openideo.com' component? Presumably, it is USA-based, which usually comes at a cost. I tried to access it, but was reluctant to 'sign up' so got no further than the Home page.

2. It seems to me that this is an extreme expansion of CVH scope and content - who pays for that? Or, could CVH profit financially from it?

3. Since you have already amassed a quantity of information, is it your wish to build this into a Repository? If so, did you (or will you be able to) obtain the sites' approvals for sharing the information you obtained? Were you doing 'groundbreaking' research, in that the sites you visited/accessed had never looked 'outside' their borders to get ideas before they built their sites?

4. How will you deal with copyright, patent and intellectual property issues? I would have thought that architects and engineers are relatively close-mouthed about these things!

5. Although CVH is globally accessible, how broad is its use? My experience (and hence personal beef) was that staff in Manitoba's regions did not always know about it - and certainly didn't access it, and these were the people who really needed its resources to help them give appropriate care (which was sometimes atrocious).

6. Would its scope be beyond that of designing a self-standing hospice (dedicated ward in a hospital, re-use of a redundant urban/rural facility)?

All of the above are not to suggest that the idea isn't intriguing - and a potentially-good use of existing information. Good luck and Thanks for the opportunity to make comment.

-Bereaved family member

This idea looks interesting - seems to be almost Wiki-like, in the way that it involves a sharing community. I agree that there is a lot of "reinventing the wheel" when it comes to these initiatives. Particularly with hospices (i.e. the Canadian/UK model of facilities rather than the US model of a program), the initial project often starts very small, with people who are inspired by the death of a loved one to do something. They usually have no resources other than a building they want to donate, if they even have that.This kind of resource would be helpful for those without much in the way of financial or systems support.I don't have much to say about the format of the presentation documents, as such things are not my strength.

- Palliative Care Physician

Sounds like an excellent idea to me – a different form of “crowd sourcing”.I agree with the premise that we reinvent the wheel far too often.Whether this approach will grow wings is another question.

- Medical Oncologist

In terms of his comments about format, etc. it is hard to comment given that I have no knowledge about the OpenIDEO process. It sounds like a really interesting opportunity and a way to capture ideas. It is always worth it if it uncovers that one nugget of info that can change the way we do business for the better, right?

- Palliative Care Nurse

Thanks for the opportunity to review and provide feedback!What an interesting approach – and capitalizing on an existing excellent resource makes great sense to me – although a very small part of me wonders if proprietary concerns may influence folks’ generally altruistic sharing behavior?Good luck with this submission – and whether it proceeds as is – I do believe the use of social media is becoming more of the norm, rather than exception, especially with those younger than many of us – and who need to be our future leaders and supporters.

- Research Nurse

Will someone be curating the incoming information?

•If anyone can upload, curation will be necessary. Unfortunately it also presents the issue that the information can become strongly biased, especially given the political, personal, religious, etc. sensitivity of the subject.

•Possible solution using the weekly publication: Maybe each week the subject could be approached from a different group’s viewpoint.

◦Every week, readers would be given the opportunity to learn about less tangible information that is not as easily “searched for” in a search bar.

◦Being able to consistently learn information would keep the publication interesting.

◦This would also present an exciting research opportunity to the curator allowing them to contribute to the information being collected and accumulated on the website.

•The information in the weekly articles should be presented in an emotionally “light” fashion.

◦If readers are left feeling emotionally drained after their first experience reading the publication they will not return by fleetingly clicking on a link that passes through their email. People will not return easily and often if they know they have to prepare themselves emotionally for what they are about to read, especially if they will be in a public place when the opportunity to read arises.

•It should be presented in a simple enough way that anyone can understand it, but is not “dumbed down” and insulting to the intelligent user group that this publication is intended for.I hope that helps!

- Designer

What a fantastic idea! I appreciate how comprehensive this document is.

While I was working in Regina they were working on a couple Hospice/Care Homes projects, I personally remember finding it extremely challenging to find relevant precedents. Although there are some websites that provide information on existing projects there was little to no feedback from the users- employees, patients, family members etc.

I think it would be extremely beneficial for designers to gain a greater sense of the user experience, perhaps the website could have a more detailed drop down section with different types of feedback whether it be write ups, quotes or small videos.

I like the idea of a forum and discussion board - who will be running it? Will users of the site have the opportunity to create different categories and start a new forums or will a curator create generic topics.

You reference existing architectural websites, which are all updated daily, how often would this site be updated?Thanks for sharing this, I am looking forward to seeing how this moves forward.

-Architect

User Experience Map:Based on what I read:

1. Experience: curating & aggregating: architecture, landscape design, occupational design, interiors, programs, dates-built, size, cost, location, concepts.

•The‘experience' is clearly stated and quantitative and in some way wanting inspiration.

◦Inspiration seems like an opportunity in the context of end-of-life; end-of-life could be / is clearly bigger than some of its existing institution/s.

◦The‘experience’ is part of the theme of the Experience Map but it could be / should be understood within a gripping context; I suspect the aspirations are / could be far greater than what theexperience currently stipulates. Idon’t see the provoking context I want yet, to contribute what is most valuable to the project, ideas.

◦Possible context for the‘experience’ could look something like the following:‘End-of-life, in some places isacknowledged in an inspiring way, for it’s importance, specificity of institution, culturally-crafted atmosphere,… This website, for example, wants to collect, display ad inspire ideas of what end-of-life was, is and could be.

Effort and time from colleagues and others is what is wanted for this 'project'? To contract time and effort from others we shouldshare what inspires us. I feel this or something should radiate from the material presented.

2. Motivation: opportunity is one motivator I see here. Ask the following: how do we motivate individuals to be inspired so they contribute clear and quantitative information? Perhaps the above notes on experience with relation to inspiration can help.

I have not necessary read your documents the way you want them to be read but they, and past related meetings about the subject, have inspired my thinking about end-of-life.

-Architect

This is great! And a very worthwhile effort, for certain. The submission itself is very comprehensive and I don’t have too much to add other than the following:I’m not sure where to work it in, but you may want to add a ‘lessons learned’ aspect, for those whose facilities may be older, and/or without submittable plans etc. Some facilities (or their consultants/architects) are reluctant to share programs and plans, and/or the client may feel the facility is outdated and therefore not relevant. But what 'could be better' is often as useful (or more) than what has been done and is working well. You may also want to have categories for the types of spaces – patient spaces, family support, clinical support, outdoor amenities etc. to help people classify their contribution. If I think of anything else, I’ll let you know. I think the most critical aspect will be creating awareness and disseminating information. Once established, like all online resources, it’s a matter of ensuring ongoing content. Hopefully that will be facilitated over time by the creation of more and more facilities to support end-of-life care.

- Senior Consultant, Facilities planning firm

I think this a great idea…Houzz came to mind as I was reading the proposal and I noticed you also mentioned it. I think the challenge will be enticing people to contribute to the site, specifically healthcare administrators or staff. I think designers would like to showcase their work and ideas so that may not be as challenging.

- Chief Administration Officer in the Health Region

Overall it looks like a great idea. I read the documents and found the writing concise and it explained a lot in just a few words, very well done. I don’t think there was much more you could change or improve upon, it was crystal clear to me – the concept of incorporating administrators/designers/architects/etc AND family/friends/patients/etc into a site of this nature makes a lot of sense and I hope it makes it further, it is well worth developing.

I was just thinking, do you think there may be concerns of copyright with designs/plans that would need to be addressed before someone would be willing to share their designs/plans? Or is that something that becomes “owned” once the designs are handed over to the administrators and it is decided by them – like yourself say with the ICDPC? Just wondering because a lot of time and funding goes into developing these things, I was just wondering.

Also, recognition for contributions (it kind of relates to my thought above) should at least come with full recognition of the person / organization contributing and, if they have it, a complete profile of the organization and any web links they may have. Not sure about an awards program because it seems counter intuitive to building a collaborative community like this one.I hope that little bit helped. Thanks.

- First Nations health administrator

Congratulations on advancing to the next stage in the End of Life Open IDEO challenge! And thank you for inviting me to review your OpenIDEO Refinement exercises.

I have a few general observations to share—

Regarding the User Experience Path document

•Simplify the User Experience flow. Be strategic by giving us just enough information at this point to convey one user’s pathway, e:e. And that would be Harvey’s.

•Consider refining things slightly, to something like—

◦Harvey is a HC leader who directs his team to source best practices in Hospice design and operation

◦The team learns about this tool via one or more of the communication channels you’ve described

◦The team finds that the data in the repository is rich; derived from professional & grassroots sources.

◦Various team members use the repository for research, and this plays an integral role in inspiring design concepts, discussion and planning

◦This makes Harvey’s project wildly successful & the team eventually gives back, by contributing project information to the “repository” after the project concludes.

◦Watch for consistent use of tense in the verbiage. Given Harvey’s story, the DB tool exists and has enough data to make his (and his team’s) experience successful.

◦Trim out all extraneous detail. It can be incorporated later/elsewhere.

Prototyping

•Did the IDEO team say each prototype has to directly align with the Experience Path storyboard? If not, I recommend you modify a couple of priority rankings—

◦Combine Priority 1 & 3 questions (remove reference to newsletter distribution), and here’s why….

◦At this point in time it’s important you—

▪Determine a good gauge of industry/community uptake.

▪Get data in support of this.

▪Collectively agree what will trigger project go/no-go to the next stage of investigation/investment (time, resources, cost).

◦It’s risky to proceed into any kind of development prior to (e.g. for most organizations, gone are the days of "if we build it they will come").

◦You need to know with confidence that there is demand for the concept and that it can be sustained/supported over time (e.g. finance strategy)

General comments: Important to think about the finance strategy/plan for this endeavour, if you haven’t already.

•You might want to have a proactive conversation with a lawyer: the legal implications, if any, regarding the collection and storage of design data (e.g. documents, plans, budgets, etc.) to rule out any inadvertent risks.

I hope these comments are helpful as you push through the coming week towards the upcoming deadline. If I may be of further assistance, it would be my pleasure.Wishing you every success with this endeavour!

- IT business consultant

1