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"Get to Know Me" 2.0: digitally personalizing the ICU experience for patients, families, and providers (updated 8/1)

A tablet-based display allowing families to share -- and ICU providers to learn -- longitudinally, who the patient is as a person.

Photo of Ken Rosenfeld
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Who is your idea designed for and how does it reimagine the end-of-life experience?

Get This digital product is intended for the full range of ICU providers (doctors, nurses, social workers, therapists, chaplains) and for families, to enhance communication about personhood -- physical appearance, life story, social connections, values, and preferences -- of the patient. It will help providers gain a deeper understanding of the individual behind the patient, and also permits families to connect with, and reflect on over time, their loved one's personhood and deeply-held values.

CONTENTS

Get to Know Me 2.0:  Overview

User Experience Map

The Impact of Get to Know Me 2.0

Future possibilities

_______________________________

Get to Know Me 2.0:  Overview

Get to Know Me 2.0 (GTKM) adapts a poster developed by Dr. Andy Billings, the palliative care program founder at Mass General Hospital.  The GTKM poster is posted inside of each ICU room, and offers space for a photo, as well as information about an individual's favorite activities, personal background and profession, most satisfying accomplishments, and other information that might humanize the patient to staff.

Image title


In "Get to Know Me (GTKM) 2.0," this simple poster is built it into a Web-based application, which provides important advantages:

    -- provides greater opportunity for photos and detailed stories

    -- permits contributions by multiple family members

    -- allows for information to be provided over time, permitting updates related to family needs and other important communications to the ICU team

    -- is portable, so that the patient's profile can be accessed from any enabled device


User Experience Map

The GTKM patient
Sarah's GTKM intro
Completing GTKM
Using GTKM in the ICU
Connecting through GTKM


Prototype Images from the Website

The following are examples of prototype pages from the family data entry pages, as well as the provider interface, for the GTKM website:

GTKM homepage
Author sign-up page
Author sign-in page



Provider interface -- photos

The Impact of Get to Know Me 2.0

GTKM has the potential to serve important functions for ICU care delivery:

1) In introducing GTKM to the family, the GTKM informational brochure also also gives important practical information about the ICU.  Informational brochures are recognized (by the National Quality Forum) as an indicator of high-quality ICU care, although hospitals have been slow to adopt this quality standard.  Thus, the GTKM introduction process itself can indirectly raise the quality of ICU care.

2)  It permits the ICU team with an efficient and  structured way to collect relevant information about the patient's and family's personal history, which can inform goal-setting and decision making discussions,

3) It permits multiple ICU members to gain insight to the patient's story, which may lead to more human-centered interactions both with the patient as well as with family members,

4) It allows (multiple) family members to provide a patient's "story," over time, in a way that maintains their connection to that story, even when the ICU stay has fundamentally altered it,

5) It has the potential to enhance provider satisfaction and reduce burnout, by maintaining personal relationships with patient and family.

Future possibilities

We regard the GTKM format as an important addition to ICU care in the current health care environment, which too often lacks continuity or coordination across providers and care venues.  As palliative care programs move in the direction of 1) earlier patient identification, and 2) more longitudinal integration into care, GTKM has the potential to be adapted to be initiated earlier in the illness course, after a patient is first identified as having a life-limiting illness.  Within this adaptation, the patient and family could all participate in its construction, potentially making it a much richer story to share with others.   Finally, GTKM could be integrated with the advance care planning process, in order to frame patients' values and treatment preferences within the context of their personal narrative and simultaneously share that framing with the family.

The steps by which the GTKM process is introduced, completed by the family, and used in clinical practice are outlined in a User Experience Map, Powerpoint of a GTKM prototype, and workflow of the GTKM process.

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

1) Pilot the GTKM process using a new poster format that incorporates the latest knowledge about what personal and goals-based information patients, family members, and providers feel is most relevant to understand a patient's "story" and informing treatment decision making.
2) Evaluate the pilot qualitatively through cognitive interviews with family members and providers, probing the proposed digital format and inquiring about what features they would hope to incorporate into it.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

1) Helping design the GTKM process, in order to address time efficiency, literacy, privacy, and other concerns in an elegant way.
2) Designing the Web-based interface where families enter GTKM data, including making it user-friendly, private, and amenable to multiple authors and longitudinal input
2) Designing a provider user interface that is maximally effective in conveying needed info and also time-efficient
3) Assuring that all HIPAA privacy concerns and other regulatory issues are covere

Tell us about your work experience:

I work a palliative care physician and have worked in palliative care program development, quality improvement, and health services research.
My collaborator, Rebecca Perez, is owner/creative director, Studio Civico

This idea emerged from

  • An Individual
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Attachments (5)

Get-to-know-me_user-experience_v2_KR2.pdf

This is our current draft of the user experience profile. We have a bunch of questions that we'd appreciate input into, including: 1) what is the right level of privacy protections (user passwords, etc), especially for busy hospital providers, 2) how do we preserve coherence of a profile that may have multiple authors (the primary author and up to 3 secondary authors), and 3) what is the most effective provider graphical interface, in terms of ease of use and ability to convey meaningful info.

Workflow draft 7-16.docx

This is a basic draft of a detailed workflow for GTKM, along with some questions/issues we're still struggling with.

Get to know me poster.pdf

This is the only version of the Mass General GTKM poster I've been able to find. I have inquiries out to the MGH folks to see if there's a newer version out there; any assistance in this would genuinely be appreciated!

34 comments

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Photo of Lisa
Team

Great idea! As someone who works in Healthcare I see different versions of this suddenly popping up that I was not aware of before. Wish it would be introduced much earlier in the process, even to individuals who may not be in the moment ill. There's a historical aspect to it that would definitely serve a purpose to the next generation and I'm sure be very much appreciated.

Photo of Teri Rose
Team

I love this idea. I have been both on the patient and provider side and this would humanize what can be a very degrading experience. Super great for the ICU but I see it everywhere. Many things in various areas in process that are similar to this but this is my favorite. Can't wait to see it come to life.

Photo of Julia Koskella
Team

Hi Ken,  this reminds me of a Norwegian solution for care homes, where personalised "get to know me" forms are posted on each patient (with a particular focus on patients with dementia) and nurses etc are trained to arrange activities that match their personal interests. Re-focusing the care system from "what's wrong with you" to "who are you as a person"? So needed. Hope it helps! Here's a description in English: http://scandinavia.ashoka.org/fellow/lone-koldby 

Photo of Doug Wilson
Team

This feels like such a fabulous idea. I envision a tab in the EHR that links to the patient's GTKM site. It could be highlighted whenever something is added that the provider hasn't seen yet. Thanks for this wonderful addition to the evolution of human caring.

Photo of OpenIDEO IDEO
Team

Congrats on being a Top Idea, Ken! It's been absolutely inspiring to see how you've developed Get to Know Me 2.0 to re-imagine the end-of-life experience for ourselves and our loved ones. What an amazing journey it has been. In the coming weeks, we'll be making an official announcement to celebrate you and the other Top Ideas of the End of Life Challenge.



In the meantime, we would love for you to share your story in the upcoming End of Life Impact Phase. The Impact Phase is a space where the OpenIDEO community can share updates on how our projects are progressing beyond the challenge. For reference, here's a template for writing an Impact phase story:http://ideo.pn/1U9DrSN Well done Ken!

Photo of Amy Holliday
Team

Impressed with your offering! Would provide a pivotal point for many families to re-set their focus on "What else can be done" to "What would the patient have valued in the past and what conversations might they have had to give family comfort now?"

Photo of Shane Zhao
Team

Great updates Ken! We're loving the Get to Know Me updates you and Rebecca Perez have done. It'd also be helpful to format your post with strong subtitles and bullet points so people may easily grasp all the main points of this idea at first glance. Check out how the Vykarious team formatted their idea:)

Photo of Ken Rosenfeld
Team

Shane, I'm having a hard time figuring out how to insert our user experience images into the text itself; can you help?  (my cell is 310-991-1906)

Photo of Shane Zhao
Team

Hi Ken, you can insert an image by: 

1. Click on Edit Contribution
2. Scroll down to Full Description
3. Click on the Insert Image button in the toolbar of the rich text editor (it should be the 3rd button from the right. When you hover over the button you should also see "Insert Image" pop up)
4. Locate the image on your hard drive
5. Upload and save. 

Let me know if that works!

Photo of Ken Rosenfeld
Team

I have the User Experience Map in a pdf file but don't know how to convert it to jpeg images which is required.  (I'm out of phone reception and can only take Facetime calls)

Photo of Bettina Fliegel
Team

I love this idea.  I think it is essential and would like to see it expand beyond the ICU to other wards in a hospital.  I think it takes personal experiences to really get what happens to patients, as opposed to seeing and working with them as a clinician.  Seeing how family members have been spoken to by staff once they are wearing a hospital gown has been very instructive.  Somehow identity becomes blurred.
Anyway, I really like this idea.  My one concern is whether staff will take the time to look at it on a digital device.  I would suggest using both, a board, maybe dry erase, and the digital version which can become a repository overtime.  Maybe have a new thought, idea, "like" posted on the board daily to keep things fresh?
Looking forward to reading updates as you develop the idea!

Photo of Ken Rosenfeld
Team

Hi Bettina,
  I really like your suggestion of having a readily-accessible form of the personal profile available to all providers.  As you can imagine, there are some tradeoffs, with the poster version being unable to readily be modified and also to have more privacy/HIPAA concerns than a digital profile, which can be password-protected.  But I certainly recognize the barriers to accessing the digital profile.  This would actually be a great experiment during piloting, i.e. poster vs digital vs both . . .

Photo of Bettina Fliegel
Team

Hi Ken.  If you use dri-erase boards or chalk paper (the kind that parents put in kids rooms) for the boards in the rooms they can be modified whenever.  Maybe test that?  I can see families also using the board to leave "notes" for their loved one.  Maybe leave a part empty and see what happens?

Photo of Ken Rosenfeld
Team

I like the brainstorm, though I can't imagine the ICU team doing OK with that sort of family activity in the unit let alone the patient's room!    I can imagine something like this as a pilot, if the whiteboard could be carried into a waiting room to work on and then return, though I wonder about its practicality.   I think the current posters, which appear to be used at a number of ICUs, are about 2 feet by 3 feet and are located well into the room, for privacy's sake.

Photo of Bettina Fliegel
Team

They sell small boards, for home use.  That is what I was thinking.  The kind you can hold even.  Some are magnetic so that might be a way to attach a photo of the person.   Maybe indicate on the board that more info is available on the digital tablet.  
https://www.amazon.com/Magnetic-Markes-6-Pack-Assorted-Colors/dp/B0186B46CM/ref=sr_1_9?ie=UTF8&qid=1468848747&sr=8-9&keywords=dry+erase+magnetic+boards
I am interested to see what you learn from whatever you try as a pilot!

Photo of Ken Rosenfeld
Team

The pilot is kind of already being done, in a bunch of hospitals (MGH, Sunnyside in Toronto, Providence Health System, etc)!   In sketching out the digital format my thought was that the tablet could be mounted on a wall in the room, if preferred...  

Photo of Bettina Fliegel
Team

Oh.  Are they doing a study?  One interesting thing is the part where it says "Other things I would like you to know about me" - assuming it is family or friends completing the board, it is what they want the staff to know about the person.  These might not always be the same things?

Would be interesting to find out whether a tablet format catches attention of staff, if they are finding the print version makes a difference in care.  

Photo of Ken Rosenfeld
Team

No, it's never been formally evaluated.  With regard to the framing of the "other things item," in most cases it'll be the family who'll be completing the poster so it inevitably will be shaped by their "lens."  In our current prototype we've expanded on that item by adding an item, "Things that my family and loved ones also want you to know..."

Photo of Bettina Fliegel
Team

Ken,
Hi again!  I like the item you added.  It makes sense.  Just to clarify you are doing a prototype of the paper poster at your hospital?  Did you make any other changes or additions to the original poster?   

 I like that you mention this tool could potentially have a positive effect on medical teams and reduce burn out.  I wonder whether practitioners at the medical centers you mention, where the poster is being tested, have any insight into whether this has changed their approach with patients or families, and whether it has enriched their own lives in any way?  This tool feels like it could potentially be a conversation starter between a nurse at the bedside doing patient care and a family member who is sitting there.  

Photo of Ken Rosenfeld
Team

Hey Bettina,
  The prototype we'll start with will riff off of the original poster, but will include some 21st-century additions (e.g. printing a montage of photos forwarded by the family member).  I also anticipate we'll include several topics not in the original GTKM poster and, collecting the information through a social worker-administered interview, use cognitive interviewing at the end of the interview to identify which content is truly valuable to the family.
  One potential fun part of the project is to design a 360-degree evaluation of the tool's impact, including chart evidence that it was incorporated into actual care delivery.

Cheers!
Ken

Photo of Bettina Fliegel
Team

The whole project sounds great!  Are you thinking about interviewing staff, ICU nurses and docs in particular, about what they might want to know about their patients, what they feel might be helpful in terms of connecting?  

Photo of Ken Rosenfeld
Team

That's the idea.  We're going to start with something close to the MGH poster (with some license based on input from a bunch of local experts), and then do cognitive interviewing with families who completed it, and providers who use it in their care.  The cognitive interviews, if designed well, should identify the key opportunities for refinement, as we move towards digitalizing it.

Photo of Lee-Jung Kim
Team

Ken Rosenfeld This idea will fit nicely with what our team is doing with "Connecting lives" - Tender memento & SuperPal App. In particular SuperPal App (proposed) is a tool that allows everyone who is dealing with the end of life to get to know the person behind the illness and provide connections. 
https://challenges.openideo.com/challenge/end-of-life/refinement/nurses-matter-too-setting-our-caretakers-up-for-meaningful-success
One of the volunteer role is actually "story- weaver"- http://media.wix.com/ugd/2a219b_f52a45219c664fa8b8252d774c80e404.pdf

Photo of Ken Rosenfeld
Team

Hey Lee, this is a fantastic project!  Reading through it inspired me with the concept that many of the ICU patients have pre-existing life-limiting illnesses and have already been connected with the palliative care system.  One possibility would be to, at some point, integrate Get to Know Me with the idea of beginning "life story construction" much earlier in the illness course.  In this case, when hospital admission occurred, there would already be a story to share . . .

Photo of Lee-Jung Kim
Team

Ken Rosenfeld as we are moving farther into the refinement stage, I see the common themes emerging: Many has to do with getting to know the person behind the illness and how we/family/caregivers/patients can all be a part of the story. There is definitely need for it. I remember visiting my grandmother two years ago in the nursing home who was suffering from Alzheimer's. I secretly recorded our conversation.  I knew she was nearing her end. She passed away this year. I wanted to share the recordings with my family (and that would have been amazing), but my phone some how wipe all the old recordings. That made me to think about capturing the stories... before the patients get too sick. I would have loved to play the recording of my grandmother with my family on her memorial service. 

Photo of OpenIDEO
Team

Welcome to the refinement phase Ken! Here are some key questions and milestones we encourage from all ideas in the Refinement:

1. How might this idea address the unique needs of the target audience you're designing for?
2. Clearly summarize the value offering of your idea in 1-2 sentences
3. Communicate your idea in a visual way with user experience maps http://ideo.pn/UX_Map
4. Identify assumptions that need to be answered in order to validate your value offering: http://bit.ly/1Oi8ZHu
5. Collect feedback from potential partners and users to answer the assumptions you’ve identified.

Lastly, here's a useful tip: When you update the content of your post, it'd be helpful to indicate this in your idea title by adding an extension. For example, you can add the extension " - Update: Experience Maps 07/12" to you idea title. This will be a good way to keep people informed about how your idea is progressing!

Photo of Kyle Tevlin
Team

I am madly in love with this idea. When someone is in the ICU there is so much stress, anxiety, and fear. Families are in some of the worse emotional times of their life, and combined with the intimidating medical environment, any kind of personal support and humanity is welcome. Keeping the patient's personality alive and present is so important, especially as it's so easy for the patient to just become a "case." No doubt the medical staff would benefit from appreciating the whole person they are caring for—that feels so important. But also for the family to have the opportunity to highlight the life of their loved one—bringing them the joy of talking about him/her, as well as knowing that they are doing all that they can to bring honor, respect, and compassion to the "treatment plan." It's about bringing more humanity to healing—how could that not help in so many ways, seen and unseen?

Photo of Ken Rosenfeld
Team

Thanks, Kyle.  As I mentioned in my post, the original idea isn't my own but Andy Billings'.  He was a palliative care pioneer and an icon in our field.  My addition to Andy's work is to add what you highlighted in your post -- "About Me" being a way for families to share, across family members and over the totality of the ICU stay, their thoughts about their loved one.  I expect that there will be a whole lot of emotional processing going on in family members' contributions to the profile . . .

Photo of Aaron Wong
Team

Kyle, I love that you bring up "Keeping the patient's personality alive and present is so important, especially as it's so easy for the patient to just become a "case." "  and I love that Ken, your post title, "Get to Know Me" 2.0 - it's so encapsulating. To me, this really says, "Listen to my story" I am more than just my medical sheet!

Please check out A Celebration of Life in the ICU  by Avinesh Bhar ! I think you guys have very similar ideas and can build on each others'. 

Photo of Usha Gowri
Team

I love the idea .If it can help the patients family sitting outside the ICU and wondering about the patient ,it is a God send.I say this from personal experience of not knowing what was happening to my mother.

Photo of Ken Rosenfeld
Team

Thanks, Usha.  The hope is that the profile will help ICU providers understand better who the patient is as a person, and help family members communicate the person's story.  It will also, ideally, help the family members keep their loved one's personhood and deeply-held values in mind during difficult decisions about life-prolonging treatments.

Photo of Becky
Team

Great idea. There are some ideas like this that we are using in the UK. 

There is a "This is Me" printable document that I sometimes use for patients with dementia or delirium. Quite commonly used in UK hospitals. 
 https://www.alzheimers.org.uk/thisisme

And more recently there has been a team working on "One Page Profiles" - including a gentleman called Max (#maxeolc) who designed a one page profile for his last few months and for his last few days. 

http://peoplethinkingaction.blogspot.co.uk/2016/01/maximising-choice-and-control-in-end-of.html

Team working on One Page Profiles are here: 
http://www.helensandersonassociates.co.uk/one-page-end-life-profiles-fit-advance-care-planning-evidence/

Great to collaborate on such projects! :-)

Photo of Ken Rosenfeld
Team

Thanks, Becky.  Will certainly check the links out.  It would be great to have collaborators if by any chance we end up moving forward with this!

Photo of Becky
Team

Forgot to add. The idea of having a digital platform to build these sources of info is really appealing. 

Many people make memory boxes and write letters for their loved ones. But I haven't seen anything yet that allows you to do it easily online. And so many of us have all our visual images on line now, rather than printed off in hard copy.