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.
6. HEALTHCARE SYSTEM ALREADY HAS 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 ALREADY HAS 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 TO MEET HUMAN HEALTH NEEDS
human health needs
advances in technology
9. HUMAN CENTERED DESIGN APPROACH
Patients
*disclaimer: all patient names have been changed
Healthcare Providers
Design Thinkers
11. 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.
12. 10 OPPORTUNITY AREAS FROM RESEARCH
GENOMIC
DATA
PREVENTATIVE
MEASURES
QUANTIFIED
SELF DATA
HEALTH
DATA
PATIENT
PARTICIPATION
PATIENT
UNDERSTANDING
FAMILY
HISTORY
PROVIDER
PROVIDER
SHARING
CONFIDENTIALITY
REMAINING
HEALTHY
15. HEALTH CONDITIONS AFFECTED BY 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
Direct to
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
Direct to
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 GENETIC TESTING WAS A MORE INTEGRATED PART OF HEALTHCARE?
Newborn
Screening
Predictive
Testing
Diagnostic
Testing
19. STORIES / FINDINGS
“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
Most doctors don't
understand genetic data,
and are scared of offering
it to their patients.
Arianna /
Product Manager /
Invitae
23. QUANTIFIED SELF IS MAINSTREAM
*Dr. Jeffrey Olgin, from UCSF
iphone appto trace irregular
behaviour in a patient with
Atrial fibrillation.
24. WHAT IF IT BECAME 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 willing to share with the right people,
as long as they know they get something in return.
27. OPPORTUNITY
Understand the patients overall
lifestyle through quantified
self integration, and
consequently provide health
goals that are actionable.
30. STORIES / FINDINGS
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.
Paul
!
“Tracking a lot more data at
every patient visit. BMI,
Pain Scale, Depressing
screening, Smoking…”
Joan
Nurse Practitioner
!
31. INSIGHT
The amount of data that needs to be tracked is increasing,
but it is rare that they go back and look at the data.
34. STORIES / FINDINGS
“Would love 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 people who are healthy avoid the health system,
but having regular checkups can catch things much earlier.
38. STORIES / FINDINGS
“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.”
“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 a desire 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 that enable
patients to actively participate,
contribute and take
responsibility for their own
health.
42. STORIES / FINDINGS
“Fear of 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
47. STORIES / FINDINGS
“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.”
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 conditions are hereditary,
assumptions could be dismissed or confirmed with the help of a genetic test.
51. STORIES / FINDINGS
“The medical 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 by the doctor is often not communicated in a common
language, and there is little access additional information.
55. STORIES / FINDINGS
“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.”
Heidi
“Vaccines records are
disconnected. Half the
vaccines are through public
health initiatives, and the rest
through primary care.”
Tracey
Public Health
59. STORIES / FINDINGS
“Don’t mind 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 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.
64. Quick access
records
lifestyle
awareness &
goals
Active patient
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
Active patient
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
privacy levels
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 JOURNEY CONCEPT
VIDEO
the health service experience
FRAMEWORK FOR
ELECTRONIC HEALTH RECORD
The red thread