OpenIDEO is an open innovation platform. Join our global community to solve big challenges for social good. Sign up, Login or Learn more

A web-based matchmaking application for connection and support in the dying process

A program designed to connect a dying individual or his/her loved one with a connection to someone who can provide support and guidance

Photo of Dov
26 33

Written by

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

Dying individuals and their loved ones are prone to spiritual and/or emotional suffering, and many would benefit from additional social support. While family members, healthcare professionals, clergy, and support group peers are often helpful in this capacity, they may not be able to relate to specific aspects of an individual's dying/grieving process. This program would provide the user with a match based on characteristics that are important to him/her in order to provide a unique perspective.

My idea is a web-based and/or smartphone app-based program that allows dying individuals or their loved ones to connect with individuals that are uniquely suited to provide support and guidance. It is a re-imagination of the concept of a classic support group; rather than attending a more generic support group (often based on diagnosis alone), the program would allow individuals to specify the characteristics that are most important to them in an "empathizer" or  "sponsor," and match them accordingly. (updated 7/13/2016)

There are already many support groups, both online and in person, for people dealing with specific disease processes. These groups are inherently designed to bring together individuals with one thing in common - in the case of cancer support groups, this commonality is usually a unifying diagnosis. These groups are often diverse in all other respects, which is not necessarily a bad thing.... It is likely beneficial for 40-year-olds to speak with 20- and 60-year-olds, for those with children of different ages to compare family dynamic and for those of different faiths to discuss their unique approaches to adversity. However, the advice and support of someone with more similar backgrounds, beliefs and/or circumstances would likely be uniquely beneficial.

The goal of this program would be to create 1-on-1 relationships between people who are matched together based on commonalities of their choosing.  Given enough membership, such a program could match people based on any number of preferences using systems similar to dating services: gender, age, language, religious background, type of disease, predominant symptoms, etc. Video chatting and texting could allow these relationships to span the globe, and use of a phone- or web-based application could even allow for these connections to remain anonymous if desired. 

The end product of such a program would be the development of relationships, the extent of which would be up to the users themselves. Perhaps a patient is looking for a partner in dying or a family member is looking for an outlet to share a positive or negative experience to someone who wants to listen. Ultimately, we could create a social network, in which people can share their experiences and bring death out of the shadows. 7/26/2016

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

First, we could create a more primitive form of this service, in which participants fill out profiles and are manually partnered with each other. Participants could be identified at the time of referral to Hospice and /or outpatient/home-based palliative care programs and randomly assigned to receive the additional service described vs. the usual care provided by Hospice/palliative care. Survey-based outcomes could identify if the program improves quality of life over usual care alone. 7/26/2016

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

Obviously such a venture would require someone with tech experience to create and manage such a service and its web and/or phone app interface. The business aspect and sustainability of such a program would also be a challenge as this service should be free and without invasive/disruptive advertising.

Tell us about your work experience:

I recently finished internal medicine residency, and started a palliative care fellowship at Kaiser Permanente in LA. I have an interest in design and I'm a firm believer that user-friendliness is the key to success in almost everything. 7/26/2016

This idea emerged from

  • An Individual

26 comments

Join the conversation:

Comment
Photo of OpenIDEO
Team

Welcome to the refinement phase Dov! 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 Shane Zhao
Team

Hi Dov, 

Here are some feedback from our sponsors and panel of experts. Looking forward to how you'll iterate on this in the upcoming weeks! 

We're really excited by the emergence of ideas around finding a non-medical specialist who would connect with patients and families. The rise of the 'death doula' is a really interesting one, but again, thinking of a service or platform for their deployment is an interesting design challenge. Particularly for those at the very last stages of life, a personal interaction to explain how things may go, would be incredibly powerful. It also is not limited to hospices or homes, they could easily be introduced in hospitals too.

Also, you might like tot check out Jim's Mortality Coach idea!

Photo of Cheryl
Team

When my mom was in hospice, there was a woman in the bed across from her who had no family.  The hospice nurses were wonderful but often this woman had no one at her bedside.  Would you please consider exploring the idea of having individuals who would come alongside a patient like this woman so that someone who has no family or friends can be there to help make some meaning of the time that is left.  Thank you and I wish you well.

Photo of Joy Johnston
Team

I like this idea a lot; the end-of-life phase for the dying and their caregivers can be isolating. Friends and family sometimes withdraw, so having a new support system in place with others who are going through or have experienced similar issues is essential. 

In the Alzheimer's community, there are weekly Twitter chats accessed via a hashtag where caregivers connect with one another. As others have mentioned, PanCan has a program matching newly diagnosed with survivors and caregivers.

As caregivers begin to skew younger, tools such as Twitter, Snapchat and Reddit may be able to open new communication lines and break down geographic barriers.

Photo of Barbara
Team

I really like the idea of a match.com type of website. Ideally someone requiring support would have a few people in a group (vs just one person), much like 12 step programs where one might have a (main) sponsor and then lots of back up people to talk to. This would help alleviate the stress on the sponsor and make the user more able to have support as and when they need it, despite time zone differences, quantity and types of questions etc. 

My two cents on the design by disease etc. In the last five deaths within my family, each one had completely different circumstances and I had completely different needs with each of them. A sponsor and/or support group, where I could have directed my questions, would have been so very much appreciated! For example, my daughter was suddenly in ICU on life support for 9 days. Nine days without sleep and very little access to all the information that I really could have used. I had emotional support from family and friends but no one to help me with questions. Really, dozens and dozens of questions of a variety of type. Perhaps the "sponsor" could also be chosen by type. Or maybe the question gets asked, like reddit, and answered by whomever is available. It would be critical that in some way these volunteers are vetted and verified. I would certainly pay for this as an app. It has been my idea that we need a Death Concierge service as well as more readily available Death Doulas.  

Photo of Jim Rosenberg
Team

Great idea Dov. Love the idea of matching mentors. I think Zaahira Wyne makes a good point about the emotional space that people have or don't have to mentor others while in the middle of the experience themselves. As you say, some will find that enriching and others will choose not to participate. I've found that many of those who have been there before -- who have either survived or are survivors of the person who died -- find it rewarding and even cathartic to help others going through the same experience. It allows you to make something good from your loss, and it allows you to put to work the strength and insight you discovered in your experience. This may be the more responsive community for mentors -- would be interesting to test with both potential pools.
 
Here;s another matchmaking example you might look at for ideas: http://www.evisors.com. There are lots out there now, most are for-fee marketplaces but the ideas are the same. And I think there are mentoring modules in leading enterprise HR / talent management products that might be worth looking at for ideas.   

Great stuff! Looking forward to seeing this evolve.

Photo of Ken Rosenfeld
Team

Love it, Dov.  If you want to chat more about this, just track me down!

Photo of Bettina Fliegel
Team

Hi Dov.
I like the idea of access to a matchmaking service.  You might be interested in James' post which is also a matchmaking service.  His is aimed to bring together folk for companionship at the end of life, not specifically for support during the period of dying. 
https://challenges.openideo.com/challenge/end-of-life/ideas/humans-like-me

I looked at the Pancreatic Cancer .org webpage.  They currently have a service that brings together patients/survivors and / or caregivers of patients with pancreatic cancer.  How will your service be different?  How might you approach a matchmaking service for patients that are dying via a website that is set up to provide information on treatment?  

 I like the idea of support groups themselves, for patients,  family and caregivers - together or as distinct groups.  Are there groups at your palliative care programs, groups that cross disease types?   I am referring to groups for folk that are in the process of dying, not treatment.  

Good luck developing your idea!

Photo of Dov
Team

Thanks for the thoughtful comment!

1) I think James's idea is very similar, and could in fact be integrated into the same idea. You could have a service that matches not-acutely-dying elders and then the ability to also re-match individuals with a new user when the situation changes.

2) As for the second part, I think this service is inherently different from the service provided by pancan.org in that it can match you to others based on more than just a diagnosis. Imagine you are a pancreatic cancer patient and you'd rather be connected to someone of the same age, family status, and religious background than another pancreatic cancer patient with nothing else in common. In this situation, a more comprehensive matchmaking algorithm is more likely to provide the type of connection you are seeking.

3) I'm not sure if there are general support groups on dying. I think that if given the choice between attending a general support group on dying vs. a support group on dying from the specific disease you have, most patients would probably likely choose the 2nd option. That being said, I think (as I said above) there are some things that are more important to patient's than their diagnosis. If I am the spouse of someone who is dying and I'm looking forward to raising 3 children alone in the immediate future, I might be looking for a future'single-parent support group that probably doesn't exist.  I like the idea of matchmaking, because it allows the individual to identify what is most important to him/her and hopefully find a "sponsor" or partner-in-grief based on those priorities.

Photo of Bettina Fliegel
Team

Hi Dov.  Interesting conversation!

re: #2 above - Yes I understand that this idea would be different and more inclusive, more geared towards a customized fit for what a patient or caregiver wants/ needs in a supportive relationship acutely, and going forward.  This is great!  My question is more about what platform might best serve this Idea.  Looking at the Pancreatic Action Network Web Page the front and center message is about information and hope.   Their "one on one support" is for information and access to others who have experienced different aspects of care etc.  There is a small menu on the bottom left listing many things including palliative care and hospice.  One can click and learn more.  I am curious as to where your service will best be accessed in general.   I think for most cancer patients the initial approach is finding the best treatment and going for it in terms of recovery.    One example - looking at pancreatic ca.  As physicians we are aware that in general this cancer often has a poor prognosis.  That being said in my life at the moment I have a close friend with pancreatic ca and we are very hopeful as her brother who also had panc ca is 4+ years tumor free and is now off chemo.   Odds are odds, and some beat them.   An oncologist friend once told me that when he works with patients he always presents them with this information in the beginning, to give hope.  My question is when this changes, when treatment fails and one transitions into the next phase where might they find your matchmaking service?  Will this be a stand alone social network?  The reason I brought it up was because you mentioned doing a trial via a site such as the Pancreatic Action Network in your post above.  (Does that make sense?)

#3 - Interesting I have some different thoughts on what you mention in #3.  It will be interesting to start surveying folk in palliative care about this Idea.  It will also be interesting to survey their families/friends.  
 (There is another post somewhere in the inspirations that I think you might be interested in.  I can't find it right now.  When I do I will link it here.)

Photo of Dov
Team

I think I see what you're saying. I think this service would be something to consider at the same time that you (as a physician) are considering a palliative care consult or hospice referral. As for how to find it, I think marketing to practitioners is the way to go. You could first start locally by encouraging palliative care doctors and practitioners that refer to palliative care often (i.e. oncologists, advance heart failure doctors, transplant hepatologists, etc.) to refer patients to the website/app. If the service takes off, you could then expand to non-local practitioners. Eventually, if the service becomes well known enough, patient's will discover it themselves in the way that most general practitioners and alcoholics often know about AA as "common knowledge." Does that answer your question?

Photo of Bettina Fliegel
Team

Great idea to market directly to practitioners.
 I also think that marketing to faith based community leaders might be useful.  That might create communities within communities.   Marketing to Primary Care Docs might be helpful.  Patients often have relationships with their doctors for years and trust their referrals.  Perhaps marketing through society newsletters?  One other thought - via insurance companies.   One of the Inspiration Posts was about a young woman who attended a Advance Directives/ End of Life Prep Workshop in California that was offered by their health plan.  ? Kaiser    She wrote that is was a wonderful workshop and experience for them.  Her mom then chose this daughter as her health care proxy.  Insurance plans offer many services now - so maybe linking to this can be one?

Photo of James Takayesu
Team

This is a powerful way of using social media platforms in a way to help people navigate to groups who can address their specific and individual needs as you suggest Dov.  Excellent concept and I hope to refine this further and use it as a means to help individuals who are suffering in isolation find the people in arms reach, and beyond, who can help them adapt to a new normal.  In the modern era, we often do not know that help and guidance can be right next door.  Thank you!

Photo of Bettina Fliegel
Team

James and Dov,
Hi.  Great point James -  "In the modern era, we often do not know that help and guidance can be right next door."  A friend had this experience as she struggled to get care for a child with mental health problems.  The situation was serious and it was years of struggle.  She found an online forum and communicated with other parents in the same situation.  Ultimately she became friendly with another mom who happened to live about 5 blocks away in NYC.  They are still friends after ?8 years.  

Photo of Zaahira Wyne
Team

Wow--what a great idea! The only caveat I have is that such a network may slow/sabotage the ability of "mentors" to heal from their own losses or create emotional demands that sponsors are not prepared to handle. It would be important for sponsors to have access to self-care resources and support networks of their own.

Photo of Dov
Team

Good point. I use the word "sponsor," but really this could be someone in the active stages of grieving or someone who is further removed. Of course there is always a certain amount of emotional risk you take when opening up to a stranger about such an intimate topic, but I think the potential benefits outweigh the risks. Also, this is a voluntary service, so hopefully individuals would not use it if they don't feel ready.

Photo of Zaahira Wyne
Team

Right. I think this is a manageable risk, but an important one that needs to be addressed in the platform's design.

Photo of Anne-Laure Fayard
Team

Dov, 

I completely agree on the context and the difficulty that people have to face death - in particular when doctors admit that they can't do anything more. Patients and families are then often at loss. (on the general cultural perception of death, you might want to check https://challenges.openideo.com/challenge/end-of-life/research/the-history-of-death-can-we-tame-death-again which echoes some of your points).

I like the analogy of support groups and how you also thought of how you could test the idea with a specific support group. 

One of my friends whose mother has dementia was telling me yesterday how she was talking with a tennis team mate about her experience with her mother. This person's mother has recently been diagnosed with dementia. My friend said that it seems it helped her team mate put things in perspective, feel less lonely (and ashamed) and know what to expect. 

Looking forward to seeing your idea evolve!

Photo of Anne-Laure Fayard
Team

Dov, you might also want to check the Maggie's online center which is an online service that connects patients and families with both doctors and other members: https://www.maggiescentres.org/our-centres/maggies-online-centre/ 
It does not have the match-making aspect but it might be worth looking at what they have done. 

Photo of Dov
Team

Thanks so much for the article and link! That post definitely helped my place my gut feelings about the evolution of our treatment of death into a historical context. As for the maggiescentres website, I think it looks like an excellent resource - almost like a drop-in palliative care clinic. Of course it's based in the UK, where palliative care was born....

Photo of Anne-Laure Fayard
Team

Glad you found these useful. Good luck as you refine your idea.

Photo of Pearl Sequeira
Team

Absolutely love your idea, Dov !  Check out the following link for an idea concept from a previous OpenIDEO competition on using online platforms to connect entrepreneurs with experts & investors. This may be of interest and  value for you. 
https://challenges.openideo.com/challenge/web-start-up/winning-concepts/connecting-entrepreneurs-and-experts

I believe there are versions of this idea in different domains - university students and mentors, new immigrants and employment. I would encourage you to check out these domains, as well. 

Photo of Dov
Team

That's a very cool concept - thanks for sharing. I think Priyanka's idea addresses an even more complicated issue than the one addressed here because it involves recruiting help from multiple individuals with different roles within business (funding, development, advertising, etc.). In this case, it's more of an issue of having users create profiles and finding a way of matching people based on their characteristics and what they're looking for in a potential "sponsor" or companion-in-grief. I think match.com is the perfect parallel to what I'm thinking about, in that the matchmaking happens behind the scenes based on user preferences but without direct input from the users. I'm sure there are complex matchmaking algorithms that assign matches based on preferences and the weight assigned to each preference; this is admittedly beyond my depth.

Photo of Yue Liu
Team

Great idea, I like it! It really needs high tech technology and large network platform.

Photo of Dov
Team

Thanks! Yea, I think in order for it to reach the full potential that I imagine, it would have tech requirements similar to other large social media platforms. At the beginning stages, however, you could start with manual matchmaking on an individual level. For example, as a palliative care practitioner, one could say "I have another patient going through a similar situation. would you like me to exchange your information so that you can contact one another?"

Photo of OpenIDEO
Team

Congrats on being today's Featured Contribution!