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Updated July 15, 2016- SuperPal (previously Cobot)

SuperPal is a tool that serves as a platform and technology that connects patients with resources to support their unique needs.

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

This idea is designed for nurses who want to help patients with life-affecting illnesses find access to a supportive community.
By enabling nurses to solve problems, drive conversation, actively participate in helping patients to find resources and develop social connections that will improve their end of life experience, we empower nurses and drive the culture change in how we deal with death.

Updated July 18, 2016 - SuperPal App (Previously “Cobot”)


How might we help palliative care nurses to provide connection to those who are facing death in isolation (physically and spiritually)?


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

This idea is designed for nurses who want to help patients with life-affecting illnesses find access to a supportive community.

By enabling nurses to solve problems, drive conversation, actively participate in helping patients to find resources and develop social connections that will improve their end of life experience, we empower nurses and drive the culture change in how we deal with death.


How might we empower nurses to provide community to patients to improve the end of life experience?


When faced with a new diagnosis or chronic illness, the overwhelming feeling for majority of patients is isolation, confusion, and fear. We want to mitigate these feelings so the end-of-life experience can be comfortable and calm by providing easy access to a community of individuals who are going through similar life experiences. Nurses will play a key role in making this a success.



Prototype Skit Presentation (at Mt.Sinai Hospital NYC):


https://www.youtube.com/watch?v=Shx-h63n_7c#action=share



Why:

This idea is empowering for nurses because it allows them to help patients get better access to personal connection and resources provided by outside groups.

Nurses should have the voice and power to affect change in their work. Empowerment plants seeds of personal investment, vision and leadership.

A social aggregator platform like this reimagines the end-of-life experience by providing comfort, care and community to patients at a time typically ridden with isolation and fear. This in turn will alleviate stress for nurses and caregivers. The platform would provide community and resources that are curated to the individual’s needs.

Who might use this?

The patient data will be collected by nurses in the palliative care unit using this App (user group 1). The patients can download the app and  connect with someone who is facing a similar illness, speaks his language, share same interests, and can relate to him and offer comfort (user group 2).  Families of the patients can also download the app and connect with other families who are facing similar problems. (user group 3)

We are focusing on the user group 1: Nurses


Inspirations:

Two examples were shared during the feedback phase:

  1. Two patients in the hospital who got to know each other before they were put into isolation unit were writing letters to each other for support. Nurses will carry the letters to each other. It would be nice if this app allows them to communicate with each other more freely (without waiting for nurses to deliver the physical letters to each other)
  2. There was a patient who loved James Taylor. The volunteers and nurses sang James Taylor songs for him (and sometimes the whole family would join in). It would have been nice if nurses could have connected other patients who love the same music and connect them via App and share their love of the same artists. (*Nurses clapped their hands when this idea was suggested by one of the nurses!)


How:

When a patient is admitted to the hospital, nurses will fill out a personal data via an app (SuperPal App).

The questions are not necessarily medical related but still are important to the person. For example:

1) What is your favorite song (artist),

2) what is your favorite food,

3) what is your favorite dessert,

4) who is your favorite person, etc.


The collected data will be stored in the database and based on an individual’s selection/preference, the platform would connect the patient with another individual or a group of individuals within the hospital that share a similar background, have similar interests, have similar medical condition, etc.


The nurses will work with community volunteers and organizations/partners who will be able to view the patient's’ wish lists and provide services or product to the patients.


For example: many pediatric patients’ favorite dessert is ice cream, based on the location of the hospital and available participating partners within the neighborhood, the App will match the participating store with the hospital and the volunteer team can create an ice cream social day. By providing patients with meaningful activities and connection, nurses feel empowered and rejuvenated.


Feedback from Mt.Sinai Palliative Care unit:


Positives:

Allows those who are physically and mentally isolated to connect with others.


Potential Difficulties (for having a social event):

Hard to get patients off the unit, even into another part of the hospital.


Potential alternatives:

May be good for individuals in isolation as a method of finding connections and communicating with others.  (told story of 2 boys who sent each other letter through nurses when they were in isolation and couldn’t have contact).  



Summary:

This app is designed to help Caregivers connect patients with similar interests that are either physically or mentally isolated from each other.  


By actively seeking inputs that will be stored in the database (using SuperPal app), nurses can help making an environment where the patients can get emotional and social connection they need. This app would also allow the nurses (and caretaker team) to find resources that offer support.

The response we got was a moving story about two boys who were undergoing treatment that forced them into isolation.  What they did was become pen pals with their nurses being the couriers.  

The other aspect of this App would be a platform to allow community partnerships to form that nurses can tap into to better meet their patient’s needs or wishes.  Such as a local book store providing materials to set up a reading group of the latest release of a favorite author.  



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Our idea is designed for patients with life-affecting illnesses who need access to a supportive community.

When faced with a new diagnosis or chronic illness, the overwhelming feeling for majority of patients is isolation, confusion, and fear. We want to mitigate these feelings so the end-of-life experience can be comfortable and calm by providing easy access to a community of individuals who are going through similar life experiences.

Access to the platform would be available in a number of ways in order to provide support for each individual. Individuals will be made aware of it by their doctors and/or palliative care providers. Patients can elect to self sign-up and reach out individually, or have a caregiver, medical professional or social worker sign up on their behalf after a discussion about their needs/desires for the community. Based on an individual’s selection/preference, the platform would connect you with another individual or a group of individuals that come from a similar background, speak the same language, have the same medical condition, etc.

Social media can itself be isolating as people hide behind the computer platforms that they interact in. To mitigate this, we propose to have medical practitioners (perhaps those in palliative care) or social workers involved that would offer regular “check-ins” via a phone/video call or an in-person meeting (if the hospital can provide it) for each individual in the network. This is to ensure that members feel supported and are getting the community attention they need from the network, and provide a level of accountability.

Another aspect included in the platform would be an area for the patients’ caregivers, family, and friends to learn information about their loved one’s affliction and how best the individual prefers to be supported. This is so people that want to provide support to the patient, but are unsure how, have a safe platform to learn about their illness or understand how the patient would best prefer support.

An example of a patient who may use this platform might be a graduate student from a foreign country, here on scholarship in the US. After being diagnosed with a life-changing illness, he is feeling isolating, facing language, financial, and cultural barriers. This platform could help connect him with someone who is facing a similar illness, speaks his language, and can relate to him and offer comfort and practical advice.

A social platform like this reimagines the end-of-life experience by providing comfort, care and community to patients at a time typically ridden with isolation and fear. The platform would provide community and resources that are curated to the individual’s needs.

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

We could work with one hospital or doctor and focus on building a library of available resources by connecting patients on the platform and allowing the sharing to begin.

This idea emerged from

  • An OpenIDEO Outpost or Chapter

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Photo of Anne-Laure Fayard
Team

Hi Magdalena and team, 

great to see this idea that emerged NYC OpenIDEO Chapter shared on the OpenIDEO platform. 
As mentioned Monday, you might want to check Dov's idea https://challenges.openideo.com/challenge/end-of-life/ideas/finding-a-sponsor-in-the-dying-process. Based on what your team described Monday (the online component of your idea), I can see some interesting ways to collaborate. 

I particularly like how Dov  thought of ways to prototype his idea: "Within an already existing (and preferably widely geographically distributed) support group for a specific disease process (e.g. http://pancan.org for pancreatic cancer), you could offer a trial version of this service to those who are interested, and assign them manually (without sophisticated matchmaking software) to one another. You could then survey users on whether the service was helpful and what suggestions they might have."I'm wondering if you might not want to start prototyping with an already existing support group. It might be easier to do a light prototyping. If you can join the small group of NYC OpenIDEO this Sunday afternoon, that could be an opportunity to do rapid prototyping to refine the idea and the experience journey. Good luck with the next steps!

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