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Lessons learned from Visualizing Pain - BigD18

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My first ever conference talk about visualizing pain at Big Design 2018.

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Lessons learned from Visualizing Pain - BigD18

  1. 1. Lessons learned from visualizing pain. What we can learn from communicating the complex. Kelly Park @gwkellypark #BigD18 Big Design Conference
 September 21, 2018
  2. 2. Think about your experiences of physical pain. • What is your earliest memory of physical pain? • What is the worst physical pain you remember? • What is your most recent experience with pain? • Think of a time when you have seen a loved one experience pain. • When and how do you communicate pain to others (such as doctors)? • What does pain communicate to us?
  3. 3. Now, think about your experiences of language barrier. • When do you experience a language barrier? • What is your most recent experience with the language barrier? How did you overcome it? • What kind of emotions do you feel when you encounter the language barrier? • What negative effects of language barrier have you encountered?
  4. 4. Our experiences with pain are universal, yet unique. • Pain affects more Americans than diabetes, heart disease and cancer combined. • Pain is the most common reason Americans access the health care system. • Chronic pain is the most common cause of long-term disability
 and is a major contributor to health care costs. From https://www.report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=57
  5. 5. Language barriers at home are compounded in healthcare settings. D I S C O V E R I N G T H E P R O B L E M 20% (1 in 5) of Americans speak a language other than English at home. 40% of this population are considered Limited English Proficiency (LEP). ENGLISH PROFICIENCYLANGUAGE SPOKEN AT HOME 20% 40% 1 in 5 Americans speak a language other than English at home.
  6. 6. Language barriers at home are compounded in healthcare settings. D I S C O V E R I N G T H E P R O B L E M 20% (1 in 5) of Americans speak a language other than English at home. 40% of this population are considered Limited English Proficiency (LEP). ENGLISH PROFICIENCYLANGUAGE SPOKEN AT HOME 20% 40% 1 in 5 Americans speak a language other than English at home. 40% of this population are considered Limited English Proficiency (LEP).
  7. 7. • Muscle rigidity • Abdominal pain • Joint pain • Numbness • Tingling • Burning • Dizziness U N D E R S TA N D I N G PA I N Parkinson’s Disease symptoms are difficult to put into words, even for native English speakers. William Richard Gowers (1886)
  8. 8. Technological solutions are limited. D I S C O V E R I N G T H E P R O B L E M Inaccurate Accurate Chinese German Urdu Swahili Portuguese Spanish Vietnamese French Korean Adequate
  9. 9. Technological solutions are limited. discovering the problem 76% 24% Inaccurate Accurate Chinese German Urdu Swahili Portuguese Spanish Vietnamese French Korean Adequate 11% 89%
  10. 10. Technological solutions are limited. discovering the problem Inaccurate Accurate Chinese German Urdu Swahili Portuguese Spanish Vietnamese French Korean Adequate 76% 24% 11% 89% 50% 37% 32% 32% 21% 16% 5% 50% 63% 68% 63% 42% 47% 74% 5% 37% 37% 74%21%
  11. 11. C O M P L E X U N I V E R S A L S U B J E C T I V E PA I N I S
  12. 12. C O M P L E X M Y S T E R I O U S S U B J E C T I V E PA I N I S
  13. 13. C O M P L E X U N I V E R S A L S U B J E C T I V EPA I N I S
  14. 14. C O M P L E X U N I V E R S A L S U B J E C T I V E PA I N I S
  15. 15. H O W D O W E D E S C R I B E PA I N ?
  16. 16. What essentials are missing from our representations of pain? U N D E R S TA N D I N G PA I N 101 2 3 4 5 6 7 8 90 Visual Analogue Scale (Wong-Baker)
  17. 17. How can we be comprehensive and also comprehensible? U N D E R S TA N D I N G PA I N 406 words 22 questions 220 possibilities 150 words 20 sections 78 questions McGill Pain Questionnaire
  18. 18. 101 2 3 4 5 6 7 8 90 McGill Pain Index McGill Pain Questionnaire Visual Analogue Scale Visual Communication Context Intensity Characteristic of pains Non-English Friendly Visual Communication Context Intensity Characteristic of pains Non-English Friendly Visual Communication Context Intensity Characteristic of pains Non-English Friendly 50 40 30 20 CRPS Amputation Finger/Toe After Shingles Nerve Pain Arthritis Childbirth c Back Pain 50 40 30 20 CRPS Amputation Finger/Toe After Shingles Nerve Pain Arthritis Childbirth Chronic Back Pain 50 40 30 20 CRPS Amputation Finger/Toe After Shingles Nerve Pain Arthritis Childbirth Chronic Back Pain Pain assessment tools are challenging for non-English speakers. U N D E R S TA N D I N G PA I N
  19. 19. Body parts labeled in French, Spanish, Vietnamese and Korean, respectively L A B I O SG O R G E P H Ổ I 발목 VERBAL-VISUAL COMMUNICATION Visual communication may offer language-independent options. F R O M V E R B A L T O V I S U A L French Spanish Vietnamese Korean
  20. 20. — James Campbell “If pain were assessed with 
 the same zeal as other vital signs are, 
 it would have a much better chance 
 of being treated properly.” 
  21. 21. T H E VA L U E O F S L O W I N G D O W N
  22. 22. Language barrier hinders LEP patients to describe specific characteristics of pain. D I S C O V E R I N G T H E P R O B L E M
  23. 23. Patients need to read and understand many documents 
 to navigate the complex healthcare system. D I S C O V E R I N G T H E P R O B L E M • New Patient form • Medical history form • HIPAA form • Patient Pain and Fatigue Self Assessment form • Prescription History • Consent form All in 
 English!
  24. 24. Doctors and patients sometimes use different words to describe similar pain. INFORMATION ARCHITECTURE Melzack, R., & Torgerson, W. S. (1971). On the Language of Pain. Anesthesiology, 34(1), 50-59.
  25. 25. I developed a visual system to communicate pain type and intensity. I N F O R M AT I O N A R C H I T E C T U R E SENSORY TEMPORAL SPATIAL PUNCTATE PRESSURE DULLNESS SENSORY MUSCULAR SENSORY NEURAL AFFECTIVE- EVALUATIVE INCISIVE PRESSURE CONSTRICTIVE PRESSURE TRACTION PRESSURE THERMAL BRIGHTNESS Quivering Pulsing AFFECTIVE LESSMOREINTENSITY
  26. 26. dragging hot burning penetrating piercing pricking comes and goes constant Time Thermal Sharp A card sort workshop helped me understand mental models of pain. I N F O R M AT I O N A R C H I T E C T U R E
  27. 27. excruciating smarting pricking blunt gnawing scratchy penetrating biting spreading dragging stinging dull throbbing nauseating tender intense tingling nagging numb Pain Word Familiarity The meaning of 
 many words 
 were unclear 
 to graduate-level 
 students. I N F O R M AT I O N A R C H I T E C T U R E 50% 50% Familiar Unfamiliar 3, 3, 2, 2, 2, 1, 1, 1, 1, 1, 1, 1, 1, 1, 1, 1, 1, 1, 1,
  28. 28. rasping splitting tiring exhausting sickening suffocating fearful frightful terrifying punishing flickering quivering pulsing throbbing beating pounding jumping flashing shooting pricking boring drilling stabbing lancinating sharp cutting lacerating pinching pressing gnawing cramping crushing tugging pulling wrenching hot blunt scalding searing tingling itchy smarting stinging dull sore hurting aching heavy tender taut grueling cruel vicious killing wretched binding annoying troublesome miserable intense unbearable spreading radiating penetrating piercing tight numb drawing squeezing tearing cool cold freezing nagging nauseating agonizing dreadful torturing dragging biting The McGill Pain Questionnaire includes 78 pain descriptors.
  29. 29. flickering quivering pulsing throbbing beating pounding jumping flashing shooting pricking boring drilling stabbing lancinating sharp cutting lacerating pinching pressing gnawing cramping crushing tugging pulling wrenching hot blunt scalding searing tingling itchy smarting stinging dull sore hurting aching heavy tender taut rasping splitting tiring exhausting sickening suffocating fearful frightful terrifying punishing grueling cruel vicious killing wretched binding annoying troublesome miserable intense unbearable spreading radiating penetrating piercing tight numb drawing squeezing tearing cool cold freezing nagging nauseating agonizing dreadful torturing dragging biting 50% throbbing shooting pricking stabbing sharp cutting gnawing crushing hot tingling itchy smarting stinging dull sore aching tender tiring frightful troublesome intense unbearable spreading radiating penetrating piercing numb cold nagging nauseating dragging biting
  30. 30. flickering quivering pulsing throbbing beating pounding jumping flashing shooting pricking boring drilling stabbing lancinating sharp cutting lacerating pinching pressing gnawing cramping crushing tugging pulling wrenching hot blunt scalding searing tingling itchy smarting stinging dull sore hurting aching heavy tender taut rasping splitting tiring exhausting sickening suffocating fearful frightful terrifying punishing grueling cruel vicious killing wretched binding annoying troublesome miserable intense unbearable spreading radiating penetrating piercing tight numb drawing squeezing tearing cool cold freezing nagging nauseating agonizing dreadful torturing dragging biting Even at 38 words, graduate students only understood half. throbbing shooting pricking stabbing sharp cutting gnawing crushing hot tingling itchy smarting stinging dull sore aching tender tiring frightful troublesome intense unbearable spreading radiating penetrating piercing numb cold nagging nauseating dragging biting shooting stabbing sharp cutting crushing hot sore aching tiring frightful unbearable radiating piercing cold
  31. 31. Problems understanding a medical situation by English proficiency and physician language (Wilson, et al., 2005). Limited English Proficient English Proficient Language Concordant Language Discordant 22% 20%44% 57%
  32. 32. itchy smarting stinging dull sore hurting aching heavy tender itchy smarting stinging dull sore hurting aching heavy tender cruel taut vicious killing wretched binding annoying troublesome miserable quivering pusling throbbing beating pounding jumping flashing shooting crushing tugging pulling wrenching hot boring scalding searing splitting tiring exhausting sickening suffocating fearful frightful terrifying splitting tiring exhausting sickening suffocating fearful frightful terrifying spreading radiating penetrating piercing tight numb drawing squeezing boring drilling stabbing lancinating sharp cutting lacerating pinching pressing cool cold freezing nagging nauseating agonizing dreadful torturing intense Pain is complex.
  33. 33. Image sorting revealed complexity of pain. T E S T I N G T H E V I S U A L I Z AT I O N
  34. 34. Freq.Avg Pos. Freq.Avg Pos. 4 U N I Q U E C AT E G O R I E S Image sorting revealed unexpected synonymous pain.
  35. 35. Freq.Avg Pos. Freq.Avg Pos. Freq.Avg Pos. 1 0 U N I Q U E C AT E G O R I E S Pain is distinctive yet similar.
  36. 36. BURNING PINS AND NEEDLES PRICKLING DULL NAUSEATING CONSTANT COMES AND GOES CRUSHING Many workshop participants used common visual metaphors to describe their own pain. R E S E A R C H I N S I G H T S BURNING PINS AND NEEDLES PRICKLING DULL NAUSEATING CONSTANT COMES AND GOES CRUSHING
  37. 37. NAUSEATING
  38. 38. Green + Spiral Human
  39. 39. RADIATING
  40. 40. Concentric HumanDirectional Wavy Ray
  41. 41. P I E R C I N G P E N E T R AT I N G Synonymous pain words were visualized synonymously. R E S E A R C H I N S I G H T
  42. 42. Pain metaphors may communicate certain meanings better. R E S E A R C H I N S I G H T S ONE OBJECT MORE THAN ONE OBJECT
  43. 43. Visual communication can quickly convey meanings. R E S E A R C H I N S I G H T S VS VS VS VS
  44. 44. Sender Perception Encode Decode Receiver Traditional Pain Assessment Feedback Message Verbal Message Decode Idea Encode Check Decode Idea Encode Perception Encode Decode Noise Noise
  45. 45. Idea Encode Perception Encode Patient (Sender) Provider/ Caregiver (Receiver) Verbal/Visual Message Validation Noise Language Barrier The Pain Lexicon Decode Decode Details • Metaphor • Visualization Empathy
  46. 46. W H Y I N C L U S I V E D E S I G N ?
  47. 47. Source: Microsoft Inclusive Design Toolkit
  48. 48. Source: Microsoft Inclusive Design Toolkit
  49. 49. 갑자기 어깨가 콕콕 쑤시 듯 아파요. Where is your pain? What is your pain feel like? How bad is your pain? 머리가 깨질듯이 아파요. 잠을 못잘 정도로 아파요. LEP Patients V I S U A L PA I N C O M M U N I C AT I O N
  50. 50. 갑자기 어깨가 콕콕 쑤시 듯 아파요. Where is your pain? What is your pain feel like? How bad is your pain? 머리가 깨질듯이 아파요. 잠을 못잘 정도로 아파요. LEP Patients Anyone with Pain V I S U A L PA I N C O M M U N I C AT I O N
  51. 51. LOCATION W here PAIN CHARACTERISTIC W hat How INTENSITY
  52. 52. — Elise Roy “We ARE different. And difference is the new normal we should be designing for”
  53. 53. More mindful engagement between patients and doctors can lead to more accurate diagnosis.
  54. 54. Pain is complex. emotional. universal. temporal. subjective. mysterious. complicated. evolutionary. multidimensional. And this is only a beginning.
  55. 55. Kelly Park @gwkellypark gwkellypark.com UX Designer @Thomson Reuters
  56. 56. Sources Levy, N., Sturgess, J., & Mills, P. (2018). “Pain as the fifth vital sign” and dependence on the “numerical pain scale” is being abandoned in the US: Why?. Melzack, R., & Torgerson, W. S. (1971). On the Language of Pain. Anesthesiology, 34(1), 50-59. Melzack, R. (1975). The McGill Pain Questionnaire: Major Properties and Scoring Methods. Pain, 1(3), 277-299. Møller, A. R. (2014). Pain: its anatomy, physiology and treatment. Dallas, Tex, USA: Aage R. Møller Publishing. The Design Process: What is the Double Diamond? (2005). Retrieved March 26, 2018, from https:// www.designcouncil.org.uk/news-opinion/design-process-what-double-diamond U.S. Census Bureau (2016). Language spoken at home, 2016 American Community Survey 1-Year Estimates. Retrieved from https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_16_1YR_S1601&prodType=table Microsoft Inclusive Design Toolkit: http://download.microsoft.com/download/B/0/D/B0D4BF87-09CE-4417-8F28- D60703D672ED/INCLUSIVE_TOOLKIT_MANUAL_FINAL.pdf

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