Post on 14-Dec-2014
description
PRECISION MEDICINEthe future of data driven healthcare
Shelagh McLellan // MFA Interaction Design Thesis // Umeå Institute of Design
HEALTH DATA
PRECISION MEDICINE
quantified self data
genomic data
Only a matter of time before this will be our reality
DNA SEQUENCING IS A COMMODITY
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
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
advances in technologyhuman health needs
UTILISE TECHNOLOGY TO MEET HUMAN HEALTH NEEDS
Patients Healthcare Providers Design Thinkers
*disclaimer: all patient names have been changed
HUMAN CENTERED DESIGN APPROACH
PATIENT & PROVIDER INTERACTION
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.
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
GENOMIC DATA
GENETIC TESTING SCENARIOS
Curiosity
Disease / Family health history
Newborn screening
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
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
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
Newborn Screening
Predictive Testing
Diagnostic Testing
WHAT IF GENETIC TESTING WAS A MORE INTEGRATED PART OF HEALTHCARE?
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
Neither doctors nor patients know what the genetic data means or what to do about it.
INSIGHT
Through the guidance of a genetic counsellor provide
actionable steps.
OPPORTUNITY
QUANTIFIED SELF DATA
*Dr. Jeffrey Olgin, from UCSF iphone appto trace irregular behaviour in a patient with
Atrial fibrillation.
QUANTIFIED SELF IS MAINSTREAM
WHAT IF IT BECAME THE NORM TO SHARE IT WITH YOUR DOCTOR?
“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
People are willing to share with the right people, as long as they know they get something in return.
INSIGHT
Understand the patients overall lifestyle through quantified
self integration, and consequently provide health
goals that are actionable.
OPPORTUNITY
HEALTH DATA
ob/gyn
surgeries
family
medication
medical
social
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
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
Design medical records that allow for quick input and
access to the most relevant data.
OPPORTUNITY
REMAINING HEALTHY
“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
Especially young people who are healthy avoid the health system, but having regular checkups can catch things much earlier.
INSIGHT
A yearly at home test to see where their health is at.
OPPORTUNITY
PARTICIPATION
“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
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
Provide tools that enable patients to actively participate,
contribute and take responsibility for their own
health.
OPPORTUNITY
PREVENTATIVE
“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
Preventable health measures benefit not only the system but the patient in the long run, but people find out too late.
INSIGHT
Package genetic tests with a preventable health focus, and provide close follow up, starting at a young
age.
OPPORTUNITY
FAMILY HISTORY
DISEASE OF GENOME = HEREDITARY
“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
Not all conditions are hereditary, assumptions could be dismissed or confirmed with the help of a genetic test.
INSIGHT
Combine family history with genomic data to empower people to make the right
decisions.
OPPORTUNITY
PATIENT UNDERSTANDING
“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
Information provided by the doctor is often not communicated in a common language, and there is little access additional information.
INSIGHT
Provide an online patient portal with results and
information given in common terms.
OPPORTUNITY
HEALTH PROVIDER RECORD SHARING
“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
Health records are rarely shared digitally, and the sharing only happens in one direction.
INSIGHT
Create a universal system which provides two way
provider to provider sharing
OPPORTUNITY
CONFIDENTIALITY
“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
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
Divide medical records into sections to allow access to
necessary health information appropriate to
the provider.
OPPORTUNITY
CONCLUSION
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
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
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
PATIENT JOURNEY CONCEPT VIDEO
FRAMEWORK FOR ELECTRONIC HEALTH RECORD
The red threadthe health service experience
PROJECT OUTCOME
ADVISORS / COLLABORATION
Jennifer Sarich-Harvey
Arianna Gianola
TIMEPLAN MOVING FORWARD
TIMEPLAN MOVING FORWARD
IdeationCustomer Journey
Service Blueprint
Prototype Experience
Visual Design