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Precision Medicine: Research Presentation
The document discusses opportunities for improving healthcare through precision medicine and integrating genomic and quantified self data. It identifies several pain points in the current healthcare system such as inefficient appointments and a lack of preventative care. Interviews with patients and providers revealed that neither group fully understands genetic data and they desire more participation. The aim is to present a vision for how genomic data could influence health services through opportunities like providing actionable steps based on genetic counseling, combining family history with genomic data, and enabling preventative health measures from a young age.
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Precision Medicine: Research Presentation
- 1. PRECISION MEDICINE the futureof data driven healthcare Shelagh McLellan // MFA Interaction Design Thesis // Umeå Institute of Design
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- 4. Only a matterof time before this will be our reality
- 5. DNA SEQUENCING ISA COMMODITY
- 6. HEALTHCARE SYSTEM ALREADYHAS MANY PAINPOINTS feel sick book appointment type report / research arrive at clinic decide diagnosis wait treatment plan talk with doctor pickup prescription physical exam lab results lab tests meet specialist
- 7. HEALTHCARE SYSTEM ALREADYHAS MANY PAINPOINTS feel sick book appointment type report / research arrive at clinic decide diagnosis wait treatment plan talk with doctor pickup prescription physical exam lab results lab tests meet specialist
- 8. UTILISE TECHNOLOGY TOMEET HUMAN HEALTH NEEDS human health needs advances in technology
- 9. HUMAN CENTERED DESIGNAPPROACH Patients *disclaimer: all patient names have been changed Healthcare Providers Design Thinkers
- 10. PATIENT & PROVIDERINTERACTION
- 11. The aim ofthe project is to present a future vision of how the integration of genomic data and the precision medicine model can influence the provision of health services.
- 12. 10 OPPORTUNITY AREASFROM RESEARCH GENOMIC DATA PREVENTATIVE MEASURES QUANTIFIED SELF DATA HEALTH DATA PATIENT PARTICIPATION PATIENT UNDERSTANDING FAMILY HISTORY PROVIDER PROVIDER SHARING CONFIDENTIALITY REMAINING HEALTHY
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- 14. GENETIC TESTING SCENARIOS Curiosity Disease/ Family health history Newborn screening
- 15. HEALTH CONDITIONS AFFECTEDBY GENE MUTATIONS CANCER RARE GENETIC CONDITIONS Breast cancer Lung cancer Tay Sachs PKU COMMON AGING CONDITIONS Alzheimers Diabetes MAJOR MENTAL CONDITIONS Autism Schizophrenia
- 16. GENETIC TESTING TODAY Directto Consumer Clinical Genetic Testing Newborn Screening Predictive Testing Carrier Testing Pre-implantation Testing Prenatal Testing Diagnostic Testing Drug Response Testing 23andMe ! A little bit of everything
- 17. GENETIC TESTING TODAY Directto Consumer Clinical Genetic Testing Newborn Screening Predictive Testing Carrier Testing Pre-implantation Testing Prenatal Testing Diagnostic Testing Drug Response Testing 23andMe ! A little bit of everything
- 18. WHAT IF GENETICTESTING WAS A MORE INTEGRATED PART OF HEALTHCARE? Newborn Screening Predictive Testing Diagnostic Testing
- 19. STORIES / FINDINGS “Iwas expecting interesting results, like what would kill me, but I got just numbers that mean nothing to me. I want to know how to take action.” Leo / has done 23andMe Most doctors don't understand genetic data, and are scared of offering it to their patients. Arianna / Product Manager / Invitae
- 20. INSIGHT Neither doctors norpatients know what the genetic data means or what to do about it.
- 21. OPPORTUNITY Through the guidanceof a genetic counsellor provide actionable steps.
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- 23. QUANTIFIED SELF ISMAINSTREAM *Dr. Jeffrey Olgin, from UCSF iphone appto trace irregular behaviour in a patient with Atrial fibrillation.
- 24. WHAT IF ITBECAME THE NORM TO SHARE IT WITH YOUR DOCTOR?
- 25. STORIES / FINDINGS “If I had a doctor I would want share all my data with them. I want them to have a complete picture of my health.” Kaya / did 23andMe “Would be helpful if at home glucose meters or blood pressure readings could be downloaded directly into the medical record.”
- 26. INSIGHT People are willingto share with the right people, as long as they know they get something in return.
- 27. OPPORTUNITY Understand the patientsoverall lifestyle through quantified self integration, and consequently provide health goals that are actionable.
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- 30. STORIES / FINDINGS Inthe hospital the Doctor asked why I was being scanned. I don’t remember the complex terms they use. Clearly the doctor did not read the medical record. Paul ! “Tracking a lot more data at every patient visit. BMI, Pain Scale, Depressing screening, Smoking…” Joan Nurse Practitioner !
- 31. INSIGHT The amount ofdata that needs to be tracked is increasing, but it is rare that they go back and look at the data.
- 32. OPPORTUNITY Design medical recordsthat allow for quick input and access to the most relevant data.
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- 34. STORIES / FINDINGS “Wouldlove to have a yearly full checkup to see if everything is in order.” Carol “I Avoid going to the doctor, it’s inefficient, time consuming, and don’t really trust them when they just keep on prescribing medication.” Eva “Often young people don’t think about death or illness. People usually start thinking about it when they have kids or if there is a strong family history.” Jack Oncology
- 35. INSIGHT Especially young peoplewho are healthy avoid the health system, but having regular checkups can catch things much earlier.
- 36. OPPORTUNITY A yearly athome test to see where their health is at.
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- 38. STORIES / FINDINGS “Patientsneed a reliable source of medical info (not google) similarly to the up to date medical info for providers” “I would’ve like to add to my medical record that homeopathic medicine 39 worked for sinus congestion.” “I did a lot of internet research once I was diagnosed. I even found a DIY operation” Paul ! Lina ! Joan Nurse Practitioner !
- 39. INSIGHT There is adesire for people to contribute and be more aware of their health, but they lack proper tools provided by health institutions (not google).
- 40. OPPORTUNITY Provide tools thatenable patients to actively participate, contribute and take responsibility for their own health.
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- 42. STORIES / FINDINGS “Fearof discovering something serious, but I’d rather know beforehand. I don’t wan’t to die so early.” Kayla ! “If kids were to have a gene test it would be best before they start school, to be aware of how to help them not trigger their weaknesses.” Lina ! “Hope to see a shift from burden of disease to preventative medicine measures. I’m a fan of exercise prescriptions.” Rosie Medical Student
- 43. INSIGHT Preventable health measuresbenefit not only the system but the patient in the long run, but people find out too late.
- 44. OPPORTUNITY Package genetic testswith a preventable health focus, and provide close follow up, starting at a young age.
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- 46. DISEASE OF GENOME= HEREDITARY
- 47. STORIES / FINDINGS “Mygrandma had skin cancer, so I already know I’ll get that. I have fair skin so I burn easily. I know I should use more sunscreen.” Eva ! “In risk families with a strong family history of cancer we ask if they want genetic testing for cancer genes.” Jack Oncology
- 48. INSIGHT Not all conditionsare hereditary, assumptions could be dismissed or confirmed with the help of a genetic test.
- 49. OPPORTUNITY Combine family historywith genomic data to empower people to make the right decisions.
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- 51. STORIES / FINDINGS “Themedical records are not really understandable to read, as a patient.” Paul has done 23andMe “Looked up on the internet how to interpret blood results.” “The medical chart is a legal document, so we use it for protecting ourselves and writing notes ” “I can’t remember what they said.” Pia Nichoe Clinical pharmacist
- 52. INSIGHT Information provided bythe doctor is often not communicated in a common language, and there is little access additional information.
- 53. OPPORTUNITY Provide an onlinepatient portal with results and information given in common terms.
- 54. HEALTH PROVIDER RECORDSHARING
- 55. STORIES / FINDINGS “Beforeleaving the hospital they printed a physical copy of the records, to take with me to go in an ambulance to a hospital in a different region.” Heidi “Vaccines records are disconnected. Half the vaccines are through public health initiatives, and the rest through primary care.” Tracey Public Health
- 56. INSIGHT Health records arerarely shared digitally, and the sharing only happens in one direction.
- 57. OPPORTUNITY Create a universalsystem which provides two way provider to provider sharing
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- 59. STORIES / FINDINGS “Don’tmind sharing health info. Feel like I’d get better service if they know more about my health. ” Lina “We have to rely on the patient being able to communicate the information, otherwise we have no access to medical history or medications they are taking.” “Because of confidentiality the Xray person just follows the written request, rather than taking the best photos for the problem. Then I end up going back and forth between doctor and x-ray.” Kristina Paramedic
- 60. INSIGHT Due to confidentialitylaws, health providers have little or no access to information that is critical for providing appropriate care. Patients are willing to share that information.
- 61. OPPORTUNITY Divide medical recordsinto sections to allow access to necessary health information appropriate to the provider.
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- 64. Quick access records lifestyle awareness & goals Activepatient participation sectioned privacy levels of shared records combine family history & genetic data online patient portal universal provider to provider system preventable health focus yearly home test actionable steps based on genetic counselling
- 65. Quick access records lifestyle awareness & goals Activepatient participation sectioned privacy levels of shared records combine family history & genetic data online patient portal universal provider to provider system preventable health focus yearly home test actionable steps based on genetic counselling
- 66. Quick access records lifestyle awareness & goals sectioned privacylevels of shared records combine family history & genetic data online patient portal yearly home test universal provider to provider system preventable health focus Active patient participation actionable steps based on genetic counselling
- 67. PROJECT OUTCOME PATIENT JOURNEYCONCEPT VIDEO the health service experience FRAMEWORK FOR ELECTRONIC HEALTH RECORD The red thread
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