Inside my pocket: Digital ethnography in patient-centred care

What happens if you take a traditionally static research collection tool, like the camera cultural probe (Gaver, 1999), and transform it into a real-time, bi-directional communication device to collect and share information instantly with a research team?

This talk will analyse the findings from a recent patient-centred project at a leading Melbourne cancer treatment centre. Our guiding question was: “How might we improve the experience of patients receiving chemotherapy?” I will evaluate the processes undertaken, methods used, challenges faced and share the key findings and insights as they were uncovered.

Presented by Melissa Voderberg at Design Research 2017

Transcript

1. Melissa Voderberg digital ethnography in patient-centred care Inside my pocket Melissa Voderberg
2. 01 “Empathy is at the heart of design. Without the understanding of what others see, feel, and experience, design is a pointless task.” Tim Brown PHOTOVOICE
3. Using design to improve user engagement. 01 02 “Empathy is at the heart of design. Without the understanding of what others see, feel, and experience, design is a pointless task.” Tim Brown PHOTOVOICE emotional mapping
4. (Wang, 1999; Wang & Burris, 1997) Photovoice is a participatory action research method developed to help people share images and promote discussion of key issues. 01 photovoice
5. (Wang, 1999; Wang & Burris, 1997) “Emotional maps chart human feelings onto a cartographical landscape.” (Perkins, p.130, 2009) Photovoice is a participatory action research method developed to help people share images and promote discussion of key issues. 01 02 photovoice emotional mapping
6. Human-centred design in cancer-centred care “Capture your initial impressions of radiation treatment.” T. Mullaney, et al., Norrlands University Hospital, 2012 photovoice 01 emotional mapping 02 EXAMPLES photovoice EXAMPLES
7. Research into home eating habits Joanna Montgomery. Newcastle University, 2010 Human-centred design in cancer-centred care “Take a photo of where you are eating dinner tonight.” “Capture your initial impressions of radiation treatment.” T. Mullaney, et al., Norrlands University Hospital, 2012 photovoice 01 emotional mapping 02 EXAMPLES EXAMPLES
8. Research into home eating habits Joanna Montgomery. Newcastle University, 2010 John Wayne Hill, 2015 Human-centred design in cancer-centred care San francisco residents over the age of 65 Mapping emotions (relaxed, fearful, safe, etc.) associated with locations in San Francisco. “Take a photo of where you are eating dinner tonight.” “Capture your initial impressions of radiation treatment.” T. Mullaney, et al., Norrlands University Hospital, 2012 photovoice 01 emotional mapping 02 EXAMPLES EXAMPLES
9. Research into home eating habits brendford community mapping Mapping sensory and emotional experiences within the neighbourhood. Joanna Montgomery. Newcastle University, 2010 Christian Nold, Daniela Boraschi, 2008 John Wayne Hill, 2015 Human-centred design in cancer-centred care San francisco residents over the age of 65 Mapping emotions (relaxed, fearful, safe, etc.) associated with locations in San Francisco. “Take a photo of where you are eating dinner tonight.” “Capture your initial impressions of radiation treatment.” T. Mullaney, et al., Norrlands University Hospital, 2012 photovoice 01 emotional mapping 02 EXAMPLES EXAMPLES
10. WHY IS IT IMPORTANT TO HAVE user ENGAGEMENT?
11. users willing to share user insights engaged users WHY IS IT IMPORTANT TO HAVE user ENGAGEMENT?
12. seeing human behaviour in a new way = innovation users willing to share user insights engaged users WHY IS IT IMPORTANT TO HAVE user ENGAGEMENT?
15. How might we improve the experience for someone receiving chemotherapy? PATIENT PROFILE: A woman, age 46, undergoing treatment for Breast Cancer.
16. Secondary Research User Research Develop Prototypes Test & Iterate Design Finalised Medical App | 10 Week Project PROJECT DIRECTOR: Melissa Voderberg students: Paige Nyary Anna Kalstrom Sean Huertas Chris Kitanoski Adrian Maccia Xuan Low Leon Buynevic 01 02 03 04 05
17. Secondary Research User Research Develop Prototypes Test & Iterate Design Finalised Medical App | 10 Week Project PROJECT DIRECTOR: Melissa Voderberg students: Paige Nyary Anna Kalstrom Sean Huertas Chris Kitanoski Adrian Maccia Xuan Low Leon Buynevic 01 02 03 04 05
18. interviews photovoice emotional mapping User Research
19. User Research interviews photovoice emotional mapping you guys know this
20. photovoice 01 emotional mapping 02 HOW IT WORKS ▪ ▪ Prompts provided to user. ▪ ▪ User takes photos. ▪ ▪ Research team assesses images. (spacial visualisation of experiences) (taking pictures to share)
21. photovoice 01 emotional mapping 02 HOW IT WORKS ▪ ▪ Prompts provided to user. ▪ ▪ User takes photos. ▪ ▪ Research team assesses images. benefits ▪ ▪ Visual insight to the users’ world. ▪ ▪ Can trigger NEW COGNITIVE PATHWAYS. (spacial visualisation of experiences) (taking pictures to share)
22. photovoice 01 emotional mapping 02 HOW IT WORKS HOW IT WORKS ▪ ▪ Prompts provided to user. ▪ ▪ User takes photos. ▪ ▪ Research team assesses images. ▪ ▪ Map and ‘emotion’ stickers provided to user. ▪ ▪ User plots their emotions in the space. ▪ ▪ Research team assesses the ‘emotional zones’. benefits ▪ ▪ Visual insight to the users’ world. ▪ ▪ Can trigger NEW COGNITIVE PATHWAYS. (spacial visualisation of experiences) (taking pictures to share)
23. HOW IT WORKS HOW IT WORKS ▪ ▪ Multi-modal approach– visual and kinesthetic. ▪ ▪ Assists users to SEE THE SPACE IN A NEW WAY. ▪ ▪ Prompts provided to user. ▪ ▪ User takes photos. ▪ ▪ Research team assesses images. ▪ ▪ Map and ‘emotion’ stickers provided to user. ▪ ▪ User plots their emotions in the space. ▪ ▪ Research team assesses the ‘emotional zones’. benefits benefits ▪ ▪ Visual insight to the users’ world. ▪ ▪ Can trigger NEW COGNITIVE PATHWAYS. photovoice 01 emotional mapping 02 (spacial visualisation of experiences) (taking pictures to share)
24. Cognitive pathways | Answering questions We’re pretty smart, right?
25. Cognitive pathways | Answering questions We’re pretty smart, right? If we hear a familiar question, we know the answer.
26. Cognitive pathways | Answering questions Our answer links to our memory of how we answered it last time. We’re pretty smart, right? If we hear a familiar question, we know the answer.
27. Cognitive pathways | Answering questions Our answer links to our memory of how we answered it last time. The question is just too familiar to develop alternate cognitive paths. We’re pretty smart, right? If we hear a familiar question, we know the answer.
28. Cognitive pathways | Answering questions BREAK THE PATH We need to ask our ‘old questions’ in new ways. Our answer links to our memory of how we answered it last time. The question is just too familiar to develop alternate cognitive paths. We’re pretty smart, right? If we hear a familiar question, we know the answer.
29. photovoice 01 emotional mapping 02
30. 01 1 PHOTOVOICE PATIENT PROFILE: A woman (age 46) undergoing treatment for Breast Cancer. Set up a private Instagram account with the patient.
31. 01 1 2 PHOTOVOICE PATIENT PROFILE: A woman (age 46) undergoing treatment for Breast Cancer. Researchers followed the patient from their Instagram account. Set up a private Instagram account with the patient.
32. 01 1 2 PHOTOVOICE 3 PATIENT PROFILE: A woman (age 46) undergoing treatment for Breast Cancer. Researchers followed the patient from their Instagram account. Set up a private Instagram account with the patient. Mailed out a staggered series of prompts.
33. 01 Patient responded by taking photos and uploading to Instagram. 1 2 4 PHOTOVOICE PATIENT PROFILE: A woman (age 46) undergoing treatment for Breast Cancer. Researchers followed the patient from their Instagram account. Set up a private Instagram account with the patient. 3 Mailed out a staggered series of prompts.
34. Uploads come through to the researchers’ feed. 01 PHOTOVOICE
35. Uploads come through to the researchers’ feed. Ability to ‘like’ and give live feedback can encourage user to build more content. 01 PHOTOVOICE
36. Uploads come through to the researchers’ feed. Opportunity to ask follow on questions, while the user is in the environment. Ability to ‘like’ and give live feedback can encourage user to build more content. 01 PHOTOVOICE
37. 01 “Please take photos of your food or snacks.” PHOTOVOICE prompt:
38. 01 “Is there any food/drink you really miss?” RESEARCHER: PHOTOVOICE “Please take photos of your food or snacks.” prompt:
39. “I miss alcohol n raw fish.” 01 “Is there any food/drink you really miss?” RESEARCHER: PHOTOVOICE PATIENT: “Please take photos of your food or snacks.” prompt:
40. 01 Chemo reduces white blood cells, risk of food poisoning. PHOTOVOICE insight:
41. 01 PHOTOVOICE “Today’s treatment is going to take 5 hours. Ugh.” PATIENT: “Please take us through your daily routine.” prompt:
42. “This painting is kind of annoying me. Think it’s coz I’ve been here since 9am. “Today’s treatment is going to take 5 hours. Ugh.” 01 PHOTOVOICE PATIENT: “Please take us through your daily routine.” prompt:
43. Suddenly, you have no choice about how you will spend your day, who is in charge of examining your body and how much time you will spend waiting to know more information. Chemotherapy Patient, age 46 “ “
46. 02 EMOTIONAL MAPPING
47. 02 1 3 2 EMOTIONAL MAPPING Maps of the cancer treatment centre provided to the patient. Patient annotated her experience onto the map. Patient provided with stickers to represent emotions. CALM HAPPY/ HOPEFUL BORED ANGRY/UNCOMFORTABLE
48. 02 Patient responded to the hands- on process of ‘identifying and organising emotions’, in a positive way. EMOTIONAL MAPPING Frustration experienced by patient at multiple locations where recall of her current medications was required. insight:
49. “I use my phone for everything.” Juggles multiple cancer treatments. Majority of info provided hard copy. Needs easy access to treatment plan. 01 02 medical app Patient can add medication, check appts or adjust treatment plan in under 3 taps. insights insights photovoice emotional mapping
50. 1. Live data. 2. Pacing out prompts. 1. Mix up the methods. 2. “Meaning making resource” (Reavey, 2012). what worked what worked photovoice emotional mapping 01 02
52. thanks. @design_at_nine
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