precision medicine: research presentation

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

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

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

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