Precision Medicine: Research Presentation
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![Page 1: Precision Medicine: Research Presentation](https://reader034.fdocuments.us/reader034/viewer/2022051323/548c78a9b47959af268b469b/html5/thumbnails/1.jpg)
PRECISION MEDICINEthe future of data driven healthcare
Shelagh McLellan // MFA Interaction Design Thesis // Umeå Institute of Design
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HEALTH DATA
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PRECISION MEDICINE
quantified self data
genomic data
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Only a matter of time before this will be our reality
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DNA SEQUENCING IS A COMMODITY
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feel sick book appointment arrive at clinic wait talk with doctor physical exam lab tests
type report /research
decide diagnosis treatment plan pickup prescription lab results meet specialist
HEALTHCARE SYSTEM ALREADY HAS MANY PAINPOINTS
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feel sick book appointment arrive at clinic wait talk with doctor physical exam lab tests
type report /research
decide diagnosis treatment plan pickup prescription lab results meet specialist
HEALTHCARE SYSTEM ALREADY HAS MANY PAINPOINTS
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advances in technologyhuman health needs
UTILISE TECHNOLOGY TO MEET HUMAN HEALTH NEEDS
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Patients Healthcare Providers Design Thinkers
*disclaimer: all patient names have been changed
HUMAN CENTERED DESIGN APPROACH
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PATIENT & PROVIDER INTERACTION
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The aim of the 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.
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10 OPPORTUNITY AREAS FROM RESEARCH
GENOMIC DATA
QUANTIFIED SELF DATA
HEALTH DATA
PATIENT PARTICIPATION
PATIENT UNDERSTANDING
REMAINING HEALTHY
PREVENTATIVE MEASURES
FAMILY HISTORY
PROVIDER PROVIDER SHARING
CONFIDENTIALITY
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GENOMIC DATA
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GENETIC TESTING SCENARIOS
Curiosity
Disease / Family health history
Newborn screening
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HEALTH CONDITIONS AFFECTED BY GENE MUTATIONS
Breast cancer Lung cancer
CANCER RARE GENETIC CONDITIONS
COMMON AGING CONDITIONS
MAJOR MENTAL CONDITIONS
Tay Sachs PKU
Alzheimers Diabetes
Autism Schizophrenia
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Newborn Screening
Predictive Testing
Carrier Testing
Pre-implantation Testing
Prenatal Testing
Diagnostic Testing
Drug Response Testing
23andMe !
A little bit of everything
Clinical Genetic Testing Direct to Consumer
GENETIC TESTING TODAY
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Newborn Screening
Predictive Testing
Carrier Testing
Pre-implantation Testing
Prenatal Testing
Diagnostic Testing
Drug Response Testing
23andMe !
A little bit of everything
Clinical Genetic Testing Direct to Consumer
GENETIC TESTING TODAY
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Newborn Screening
Predictive Testing
Diagnostic Testing
WHAT IF GENETIC TESTING WAS A MORE INTEGRATED PART OF HEALTHCARE?
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Most doctors don't understand genetic data, and are scared of offering
it to their patients.
“I was 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
Arianna / Product Manager /
Invitae
STORIES / FINDINGS
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Neither doctors nor patients know what the genetic data means or what to do about it.
INSIGHT
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Through the guidance of a genetic counsellor provide
actionable steps.
OPPORTUNITY
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QUANTIFIED SELF DATA
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*Dr. Jeffrey Olgin, from UCSF iphone appto trace irregular behaviour in a patient with
Atrial fibrillation.
QUANTIFIED SELF IS MAINSTREAM
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WHAT IF IT BECAME THE NORM TO SHARE IT WITH YOUR DOCTOR?
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“Would be helpful if at home glucose meters or blood pressure readings could be downloaded
directly into the medical record.”
“ 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
STORIES / FINDINGS
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People are willing to share with the right people, as long as they know they get something in return.
INSIGHT
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Understand the patients overall lifestyle through quantified
self integration, and consequently provide health
goals that are actionable.
OPPORTUNITY
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HEALTH DATA
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ob/gyn
surgeries
family
medication
medical
social
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In the 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.
“Tracking a lot more data at every patient visit. BMI, Pain Scale, Depressing screening, Smoking…”
Joan Nurse Practitioner !
Paul !
STORIES / FINDINGS
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The amount of data that needs to be tracked is increasing, but it is rare that they go back and look at the data.
INSIGHT
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Design medical records that allow for quick input and
access to the most relevant data.
OPPORTUNITY
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REMAINING HEALTHY
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“Would love to have a yearly full checkup to see if everything is in
order.”
“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.”
“I Avoid going to the doctor, it’s inefficient, time consuming, and don’t really trust them when they
just keep on prescribing medication.”
Jack Oncology Eva Carol
STORIES / FINDINGS
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Especially young people who are healthy avoid the health system, but having regular checkups can catch things much earlier.
INSIGHT
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A yearly at home test to see where their health is at.
OPPORTUNITY
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PARTICIPATION
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“I did a lot of internet research once I was
diagnosed. I even found a DIY operation”
“Patients need 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.”
Lina !Joan
Nurse Practitioner !Paul !
STORIES / FINDINGS
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There is a desire for people to contribute and be more aware of their health, but they lack proper tools provided by health institutions (not google).
INSIGHT
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Provide tools that enable patients to actively participate,
contribute and take responsibility for their own
health.
OPPORTUNITY
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PREVENTATIVE
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“Fear of discovering something serious, but
I’d rather know beforehand. I don’t
wan’t to die so early.”
“Hope to see a shift from burden of disease to
preventative medicine measures. I’m a fan of exercise prescriptions.”
“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.”
Rosie Medical Student
Kayla ! Lina !
STORIES / FINDINGS
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Preventable health measures benefit not only the system but the patient in the long run, but people find out too late.
INSIGHT
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Package genetic tests with a preventable health focus, and provide close follow up, starting at a young
age.
OPPORTUNITY
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FAMILY HISTORY
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DISEASE OF GENOME = HEREDITARY
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“My grandma 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.”
“In risk families with a strong family history of cancer we ask if
they want genetic testing for cancer genes.”
Jack Oncology
Eva !
STORIES / FINDINGS
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Not all conditions are hereditary, assumptions could be dismissed or confirmed with the help of a genetic test.
INSIGHT
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Combine family history with genomic data to empower people to make the right
decisions.
OPPORTUNITY
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PATIENT UNDERSTANDING
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“The medical records are not really
understandable to read, as a patient.”
“I can’t remember what
they said.”
“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 ”
Paul has done 23andMe Pia Nichoe
Clinical pharmacist
STORIES / FINDINGS
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Information provided by the doctor is often not communicated in a common language, and there is little access additional information.
INSIGHT
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Provide an online patient portal with results and
information given in common terms.
OPPORTUNITY
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HEALTH PROVIDER RECORD SHARING
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“Before leaving 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.”
“Vaccines records are disconnected. Half the
vaccines are through public health initiatives, and the rest
through primary care.”
Tracey Public HealthHeidi
STORIES / FINDINGS
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Health records are rarely shared digitally, and the sharing only happens in one direction.
INSIGHT
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Create a universal system which provides two way
provider to provider sharing
OPPORTUNITY
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CONFIDENTIALITY
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“Don’t mind sharing health info. Feel like I’d
get better service if they know more about
my health. ”
“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 X-ray 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
Lina
STORIES / FINDINGS
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Due to confidentiality laws, health providers have little or no access to information that is critical for providing appropriate care. Patients are willing to
share that information.
INSIGHT
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Divide medical records into sections to allow access to
necessary health information appropriate to
the provider.
OPPORTUNITY
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CONCLUSION
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Active patient participation
sectioned privacy levels
of shared records
universal provider to provider system
online patient portal
preventable health focus
yearly home test
combine family history & genetic
data
Quick access records
lifestyle awareness &
goals
actionable steps based on
genetic counselling
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Active patient participation
sectioned privacy levels
of shared records
universal provider to provider system
online patient portal
preventable health focus
yearly home test
combine family history & genetic
data
Quick access records
lifestyle awareness &
goals
actionable steps based on
genetic counselling
![Page 66: Precision Medicine: Research Presentation](https://reader034.fdocuments.us/reader034/viewer/2022051323/548c78a9b47959af268b469b/html5/thumbnails/66.jpg)
Active patient participation
sectioned privacy levels
of shared records
universal provider to provider system
online patient portal
preventable health focus
yearly home test
combine family history & genetic
data
Quick access records
lifestyle awareness &
goals
actionable steps based on
genetic counselling
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PATIENT JOURNEY CONCEPT VIDEO
FRAMEWORK FOR ELECTRONIC HEALTH RECORD
The red threadthe health service experience
PROJECT OUTCOME
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ADVISORS / COLLABORATION
Jennifer Sarich-Harvey
Arianna Gianola
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TIMEPLAN MOVING FORWARD
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TIMEPLAN MOVING FORWARD
IdeationCustomer Journey
Service Blueprint
Prototype Experience
Visual Design