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5 Secret Patient Needs

ByMartin Smith |496 views

5 Secret Patient Needs a visual presentation created with Haiku Deck, free presentation software that's simple, beautiful, and fun.

Presentation Outline

  1. 1. Five Secrets

    5 Secret Patient Needs No One Knows

    Me (Marty Smith @Scenttrail) at Duke Cancer Institute being treated after Martin's Ride To Cure Cancer ( This deck was created after speaking to Triangle Startup Weekend Health on 8.8.14 in Durham, NC.

  2. 2. 5 secret patient needs

    • "Flash" Stores w/ positive content.
    • "Sponsors" or "Mentors" or "Guides".
    • Flexible projects, jobs & demands.
    • Storytellers (to chronicle).
    • Assistants. 

    Family and caregivers are CSF (Critical Success Factors) to any patient's recovery, but no family member or caregiver is US. Unless you have or are battling cancer there are certain "circles" you simply can't enter. Those circles require the kind of legitimacy we wouldn't wish on our enemies since you have to get the Big C to become "legitimate".

    Photo by Christiana Care

  3. 3. Flash Stores

    • Need products YOU (healthy) can't imagine.
    • TOASTERS for cancer b/c all you can eat.
    • Purell et al. b/c no immune system.
    • WATER (heavy but need LOTS of it) & TEA.
    • Positive content understand even w/ "chemo bain"

    Flash stores are one of my favorite. Want to see a store so out of touch its like being transported back to the sixties? Go in any hospital store. We need stores DEDICATED to our tribe. We have product needs you, as a caregiver or non-patient. will never know about. You won't know that I bought a great toaster after the first round of chemo because toast was all I can eat. You won't know that "chemo brain" means get a toaster with FEWER bells and whistles not more. The only way to mine this data is to have a store and then LISTEN.

    Photo by Photo Giddy

  4. 4. shop

    Gives Family Something Positive To Do

    Other great benefit of an online or brick and mortar flash store dedicated to cancer, heart disease or diabetes is it gives our caregivers and family something TO DO. There is a lot of sitting around staring at you like you might croak at any minute. Not only is this creepy its nonproductive and negative. Make a rule NO NEGATIVE thoughts, content or ideas ever (and good luck with that). Biggest help to me was Pema Chodron's book Things That Scare You. Shopping is a great AWAY FROM PATIENT activity that can create some free time and lower everyone's stress.

    Photo by Hindrik S

  5. 5. positive

    Music, Books, TV, Conversations = Aid Recovery

    Photo by cello8

  6. 6. nutrition

    Where are HAMMER-like Products for us?

    Photo by GoodSportPromotion

  7. 7. feedback

    Dedicated Stores = Legitimate So We Will Share

    When you are sick NO ONE listens to you. Instead of listening everyone is scrambling to figure out how to help. When you don't feel heard the sense of disappearing in your own life, after all we aren't DEAD yet, is accelerated. Best way to solve that problem is create an ASK. The flash store should be ALL ABOUT collaboration and feedback. Why don't products have an "attribution" chain so we can see who (what other patients) help.

    Photo by marsmet526

  8. 8. guides

    Borrow "Sponsor" Idea from AA, Need 1 on 1 & Trusted

    We need a one on one guide much like a sponsor in AA. This guide would know things we don't and have traveled similar paths. Guides are needed BIG TIME at first. Once a patient feels like he/she has a plan THEY should become guides for others. The role of the guide ISN'T FUNCTIONAL. Guides have a JOB and that is guiding not changing beds.

    Photo by La Shola y EL Gringo?

  9. 9. trainers

    Need to stay ACTIVE, but HARD

    My sister Caroline is an exercise physiologist ( and she is great with patients. She is stern enough to get us out of bed and empathetic enough to not make absurd demands. Why isn't their a "trainer index" that tells me what trainers in my area, my sister lives in Colorado, are great with caner or heart disease or diabetes? Many patients have more than one problem and those trainers should be identified and easy to find

    Photo by FlickrDelusions

  10. 10. coach

    PLANS not sympathy, Coaches not Priests

    Coaches help you evaluate challenges, create plans and stay motivated. Tell me a time having a great coach like Roger Stenz or Mr. Maddox is MORE important than when you are fighting for your life. Roger Stenz coached my football team at Central Junior High in Greenwich and boy what I wouldn't give to have a talk with coach once a week or so now. Coaches ALSO must be kept out of functional support. Believe me COACHING in this 4th Quarter tied game is an important gig.

    Photo by jimbowen0306

  11. 11. work

    We need flexible but important PROJECTS

    We are AMERICANS and so define ourselves by our work. Sick means you can't be the you that existed BEFORE diagnosis because you feel lousy and being a patient is almost a full time job. Jobs and projects, of some sort, are important. Get a puzzle you can pick at. Figure out how you can make YouTube videos to TEACH something. FEEL IMPORTANT and NEEDED.

  12. 12. story

    Writers, web designers, videographers = tell legacy story.

    Your "Bucket List" projects like creating narratives for grandchildren or two generations from now are important. We need HELP (volunteers) with these kinds of strengths and a platform online that creates the vendor net and shares tips on how to tell our stories. When you are sick your mind goes back to good times. Those times make you feel better especially if you can capture them in some meaningful way. My Curagami co-founder Phil Buckley is having his father take his son around his home town to share stories of what happened and what it meant. GREAT way to get the story, but he needs someone to help capture, edit and frame that event too (Phil could do it all but then he is not "in the moment" with his father and son).

    Photo by John-Morgan

  13. 13. share

    Patients WANT To Share, No One Listening

    Being sick makes us invisible. Sure people try to help, but often their help is domineering or pitying and both of those ideas make us feel worse. Much like people who shout at blind people being sick seems to bring out the preconceived cliches about who we are now (sick). The change IN OUR HEAD isn't that dramatic. In our heads we are US. When we get treated like NOT US it drives us crazy. We (patients) are trapped. We can't say DON'T help because we need help. We can explain DON'T HELP that way because no one listens (everyone is on edge). Ever noticed how when people around you are nervous you get nervous. If you are going to be around patients BE CALM and be YOU. Treat them like THEM. Don't modify your "way of being" more than a few tiny points. We are still US in our heads, no matter how bad we look, so you should still be YOU.

    Photo by Thomas Rousing

  14. 14. travel

    Where are the special travel guides for Patients?

    Travel is another frustrating BLACK HOLE of need. Where is the travel guide that rates things like chances of getting a stomach bug, picking up the flu (due to unclean air or rooms) and flights that are too long. Where is the Ultimate Travel Guide for Cancer Patients? No one is writing that guide because they think we are dying. Guess what, we are ALL dying, but I'm going to see the Sistine Chapel before I die but need an entire SERIES of different kind of information to make that trip safely. Since dying in the chapel would SUCK, would prefer to travel safely and that means a much different thing for ME than YOU.

    Photo by maapu

  15. 15. help

    Need transactional help (email, mail, bills, groceries)

    BOY, I would give my right arm for a cleaning service, grocery, bill and pet help. Tonight I spoke at the Triangle Startup Weekend for Healthcare and got home at 7:30 only to realize, from a loudly meowing cat, I was out of cat food. Imagine this series of events. 1. I am usually in BED by about 4:00 every day now and that is when I take chemo. 2. Tonight not ONLY have I not taken my chemo but I have to go to Harris Teeter and get cat food. 3. Now I'm sitting in bed, sleep out of the question, sweating (you do a lot of that). We need transactional help with email, laundry, cleaning and groceries.

    Photo by zilverbat.

  16. 16. teach

    Feeling VALUED & Competent = IMPORTANT

    Just because I can't get my own groceries without it messing me up for energy and night sweats doesn't mean I don't want to feel valued and like my life, no matter how sick, still has meaning and relevance. A Coach would help me figure out a plan for what to teach and where. Nothing like teaching to make you feel good about being sick. Teaching feels like you are giving back and continuing to create your story (so you have value) at the same time. Teaching is also a way to tell your life's story, a way to chronicle YOU.

  17. 17. kid gloves

    Take 'em Off.

    I know caregivers are trying to help, but be aware that you help most by helping with what we AGREE you can help with. When a caregiver assumes they can help with something BEFORE asking it makes patients mad and since no one really listens to sick people anger doesn't have any place to go. Anger doesn't help us get WELL either. So be careful about presumption and take off the kid gloves. We are still here and we will make mistakes. We are all human and mistakes happen. WHEN a mistake happens LISTEN carefully to how to fix it so your help really helps and doesn't hurt.

    Photo by Huzzah Vintage

  18. 18. Patient peers

    Need Peer Group, Discuss Treatment Options

    We need at peer group of between 10 and 20. These patient peers don't have to have my cancer. The peer group is to confirm, share and provide a forum-like environment to create new dialogue with people who've traveled some of the same road. Patients Like Me is close, but way to complicated to sign up for and too worried about "matching the hatch" of my disease and disease state. Read Gladwell's David and Goliath for a great discussion about why you want diversity in your peer tribe. Diversity = perspective and perspective is everything in recovery.

    Photo by Fiona in Eden

  19. 19. inside / outside

    • Healthy can empathize but not KNOW.
    • Patients may not be able to communicate.
    • Empathy / Pity = FINE LINE.
    • Caregivers DIFFERENT than fellow patients.
    • Some things ONLY Big C tribe know.

    The ONLY people who have "BROTHER" or "SISTER" legitimacy with me are my fellow cancer patients. I love my family and they love me, but my cancer peers know me in a way my brother can't. My brother DREW is great and helpful, but he has no LEGITIMACY to have the "inside baseball" conversation. He can be fascinated by that content when shared, but luckily he is a tourist not a fellow traveler. And since the Duke Cancer Institute sequenced my brother and sister's genes Drew and Caroline will NOT get the same leukemia my father and I share (THANK YOU GOD).

    Photo by Thomas Fisher Rare Book Library

  20. 20. WHY These Issues Not Addressed?

    • Patients too sick to fix. 
    • Non-patients can't know. 
    • Sick = marginal anyway (so accept).
    • Health Industrial Complex focused elsewhere.
    • TALK & NO ONE Listens (b/c sick, different).

    There are all kinds of reasons patients have a long list of "secret" unmet needs despite all the people scrambling to help us. My belief is the core problem is we are sick so no one listens. We hardly listen to each other these days anyway. Once a label like CANCER = DYING gets hung around your neck NO ONE listens EXCEPT fellow traveler patients who KNOW immediately since we speak a special language that sounds like pig Latin if you aren't a patient.

    Photo by Unhindered by Talent

  21. 21. hero

    Be a hero, fix an 2 of these challenges!

    Fix any 2 of these challenges are you are a hero to millions. Use technology to do it and my family's Tech Cures Cancer Fund may be able to help. Thanks for WANTING to help. Remember Together we CURE cancer in OUR lifetime.

    Photo by Gregory Kowalski

  22. 22. martin smith

    @Scenttrail @Curagami

    I'm easy to find. Type Martin Marty Smith into Google and most of what comes back should be me. If not my email is martin(at) If you can't reach me on email, I get backed up, call me at 919.360.1224. Would love to help anyone solve any of these problems.

    Photo by Gavin Lynn

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