Venue: The 14th World Congress on Medical and Health Informatics will take place in Copenhagen, Denmark.
http://medinfo2013.dk
Moderator: Dr. Marion Ball (IBM Research/JHU); Panelists: Dr. Vimla Patel (NYAM), Dr. Bern Shen (Healthcrowd), Dr. Pei-Yun Sabrina Hsueh (IBM Research)
Organizer: Dr. Pei-Yun Sabrina Hsueh (phsueh@us.ibm.com)
Personalization is key to the delivery of wellness care including preventive measures and disease management regimes, where patients take on increased responsibility for
their own health. While personalized care has already taken a giant leap through genomics, it remains a challenge to understand how individual differences play a role in patient adherence and manage recommended changes accordingly.
Practical methods of creating and evaluating personalized
systems have not been fully established. In particular, the role of data-driven analytics in producing actionable insights for practitioners is unclear, and the use of behavioral data has created additional challenges to the understanding of patient adherence for effective care delivery.
The panel will discuss the challenges that face many countries around personalized care from various perspectives. These range from behavioral aspects such as maintaining good practices, cognitive aspects such as how do individuals make decisions in the lights of good evidence, social aspects such as how to engage patients in sustaining adherence behavior, to technological aspects such as how to evaluate individual applicability of data-driven analytics and personalized technological systems.
The panel is expected to contribute to the global community by presenting lessons learned from
existing pilot designs and a collective list of recommendations for pilot design of personalized services at the conclusion of this panel.
MEDINFO 2013 Panel on Personalized Healthcare and Adherence: Issues and Challenges
1. AN INTERNATIONALAN INTERNATIONAL
HELLOHELLO
Brazil - Opa
Chinese – nin haoDutch – Hallo, Goededag
French – Bonjour German - Guten Tag
Hawaiian - AlohaIndonesian -Selamat
Japan –Japan –
konnichiwakonnichiwa
Korean – annyeonghaseyo
Norwegian - Goddag
Portugese –’OlaPortugese –’Ola
Spanish - ¡Hola!
Swedish - Hej / HallåSwedish - Hej / Hallå
Thailand - sà-wàt-deeThailand - sà-wàt-dee
Russian - AlloTurkey - Alo, Efendim
Italian – Ciao Israel-ShalomItalian – Ciao Israel-Shalom
Africa – Hallo
Polish – HALO/SLUCHAM
Arabic – As salam ‘alakumArabic – As salam ‘alakum
2. Personalized Healthcare and Adherence: Issues and challenges
2
Senior Advisor Healthcare Informatics
IBM Research,
Professor Emerita, Johns Hopkins University
Member, Institute of Medicine
Member of the Board Of Regents of the National Library of
Medicine
Past President, International Medical Informatics
Association ( IMIA)
Fellow: American College of Medical Informatics (ACMI),
Past Board member and Fellow of the Health Information
Management and Systems Society( HIMSS), American
Health Information Management Association (AHIMA)
Medical Library Association (MLA) and the College of
Health Information Management Executives (CHIME),
American Academy of Nursing (FAAN)
Marion J. Ball, Ed.D
3. Personalized Healthcare and Adherence: Issues and challenges
Panel topic: Personalized Healthcare and
Adherence: Issues and Challenges
Session 984 09.
Thursday Aug 22 10:30am-12
Auditorium
Panel on Patient-Centered Care - I
Panel topic: Personalized Healthcare and Adherence: Issues and
Challenges
Marion J. Ball
5. Personalized Healthcare and Adherence: Issues and challenges
Looking back in the rear view mirror
to the 1960’s to the early work of
Dr. Warner Slack in Wisconsin and
to Dr Morris Collen who introduced
us to the impotence of empowering
the patient as a consumer. ALSO
that the computer was an enabling
technology that could empower the
patient and the consumer.
We owe a great debt to these and
other wonderful pioneer in our field.
6. Personalized Healthcare and Adherence: Issues and challenges
What Do Consumers Want?
• We ask consumers, “What kind of health care do you want?”
– They answer in terms of quality, access and cost.
• We should ask, “How would you like to interface with the healthcare
system?”
– They would answer in terms of the kind of services and information
they want, as they would for Web-based banking or shopping.
JS Parker, Consumer Expectations Demand Client-Focused Technology, in Consumer Informatics,
2005, p 77
7. Personalized Healthcare and Adherence: Issues and challenges
Changing Behaviors to help peopleChanging Behaviors to help people
do what they need!do what they need!
““ Transparency”Transparency”
8. Personalized Healthcare and Adherence: Issues and challenges
The Future is here!
• Where we need to head is to make IT a transparent
enabler to provide the care giver and the
consumer / patient Information when, where and
how they want it to have an effective and efficient
Healthcare system.
9. Personalized Healthcare and Adherence: Issues and challenges
Lessons Learned
• The importance of re-education is sorely
underestimated. This is true for the healthcare
provider as well as the consumer.
Thanks to the Department of Health and Aging In Australia, the VA, Rod Kolodner, Barry Weiner, Hans Peterson, and John Tressling.
10. Personalized Healthcare and Adherence: Issues and challenges
Lessons Learned
• Need grass roots participation by all levels of health
care professionals in developing, implementing and
training for the new transformed health care
delivery system.
Thanks to the Department of Health and Aging In Australia, the VA, Rod Kolodner, Barry Weiner, Hans Peterson, and John Tressling.
11. Personalized Healthcare and Adherence: Issues and challenges
11
Cultural Change Management
•Approximately 80% of critical
success factors for clinical systems
installs are people and process
related, while 20% are technology
related*
HIMSS 2010 e-Presentation
*Journal of American Medical Informatics Association
12. Personalized Healthcare and Adherence: Issues and challenges
Consumer Technology
The true benefit of these technologies is
not in the quantity of data they provide, but in how
they transform data into useful information that can
make a difference, and improve value and care.
13. Personalized Healthcare and Adherence: Issues and challenges
Thank You
Merci
Grazie
Gracias
Obrigado
Danke
Japanese
English
French
Russian
German
Italian
Spanish
Brazilian PortugueseArabic
Traditional Chinese
Simplified Chinese
Hindi
Tamil
Thai
Korean
Hebrew
14. Personalized Healthcare and Adherence: Issues and challenges
Personal Health Care Decision Making
by Lay Public
Vimla Patel, PhD, DSc, FRSC
MedInfo – Copenhagen
22 Aug 2013
Panel Discussion (1):
15. Personalized Healthcare and Adherence: Issues and challenges
Vimla L. Patel, PhD, DSc, FRSC • Senior Research Scientist, The New York Academy of Medicine
• Director, Center for Cognitive Studies in Medicine and Public health
• Adjunct Professor, Biomedical Informatics. Columbia University, NY
• Adjunct Professor, Public Health, Weill Cornell Medical Center, NY
• Professor of Biomedical Informatics, Arizona State University
• Fellow of the Royal Society of Canada (Academy of Social Sciences)
• Fellow, American College of Medical Informatics
• Associate Editor, Journal of Biomedical Informative (JBI)
• Editorial Boards of Journal of Artificial Intelligence in Medicine
(AIM), Advances in Health Science Education (AHSE), Topics in
Cognitive Science.
• Past Vice-President (Member services), International Medical
Informatics Association (IMIA)
• Past Vice-Chair, AMIA Scientific Program Committee
• Past Editorial Boards: International Journal of Medical Informatics
(IJMI), Journal of Medical Decision Making (MDM)
16. Personalized Healthcare and Adherence: Issues and challenges
Models of Reasoning
• Causal
• Descriptive: Explanatory
• Standard of logical
consistency between theory
and evidence
• Episodic
• Narrative: Explanatory
• Opportunistic
• Difficulties in
differentiating theory and
evidence
Clinicians use composite models, which are between the
technical and lay models
Technical Lay Public
17. Personalized Healthcare and Adherence: Issues and challenges
Empirical Studies: How Lay Reasoning Influences
Personal Health Decisions
1. What doctor says and what patient hears and decides
about personal health care
2. Why some advice to lay public do not lead to desired
outcome
3. What medication instructions are intended to be
followed and what lay public practice
18. Personalized Healthcare and Adherence: Issues and challenges
Example 1
What doctor says and what patient
does
19. Personalized Healthcare and Adherence: Issues and challenges
Cognition and the Challenge
of Communication: Mental
Models
20. Personalized Healthcare and Adherence: Issues and challenges
Doctor-Patient Interaction
• Eliciting patients’ stories while in the
waiting room
• Doctor-patient interaction
• Stories following D-P interaction
• Follow up at home
Patel V.L, Arocha JF, Kushniruk A (2002) Patients' and Physicians' Understanding of
Health and Biomedical Concepts: Relationship to the Design of EMR Systems.
Journal of Biomedical Informatics; 35:8-16.
21. Personalized Healthcare and Adherence: Issues and challenges
Scenario for the “Christmas Problem”
The patient was a 72 year old female with past history
of heart trouble. Treated with prescription drug Inderal.
Previously hospitalized and treated for pneumonia
(given antibiotics). She collapsed in a department store
while shopping and was taken to hospital but released
shortly after being treated. Physician felt that patient’s
collapse was due to excessive Inderal. She fell again a
week later. EKG indicated that collapse was not due to
heart trouble. Patient was asked to stop taking Inderal.
One week later, the patient had an angina attack which
subsided after she had taken Nitroglycerine. The next
day, and approximately three weeks after she was
treated for her cold, she visits her physician.
22. Personalized Healthcare and Adherence: Issues and challenges
Prior Conceptualization:
Explaining Illness
Beautiful Day Go Downtown Buy Xmas Card
Patient Falls
COND:
ORD:TEM
GOAL:
Wear Heavy Coat
Wear Scarf
Wear Knit Cap
Cond :
AND:
AND:
Patient Falls
Patel V.L, Arocha JF, Kushniruk A (2002) EMR: Re–engineering the Organization
of Health Information. Journal of Biomedical Informatics 35:8-16
23. Personalized Healthcare and Adherence: Issues and challenges
Christmas Shopping
not Completed
Fell 3 Weeks Ago
Given Cold Medication
Event 1
Fluid in Lungs
Patient Representation During D-P Interaction: “The
Christmas Problem”
Collapsed while Shopping
Hospitalized
Dress
Too Warmly
Event 2
Event 3
Fell While ShoppingSlipped
Ambulance/Hospital
Stop Inderal
Chest Pain
See PhysicianNitroglycerin
Event 4
Christmas Shopping
not Completed
24. Personalized Healthcare and Adherence: Issues and challenges
Physician’s Problem Representation of the
“Christmas Problem” During D-P Interaction
Pneumonia
Hospital
Home 10 Days
Collapse
Hospital
Too Warm?
Abrupt Decrease/Cessation
in Cardiac Medication
(Inderal)
Slipped?
Recommendation:
Go back to Inderal
Decrease dosage
Side Effects:
Weakness
Fainting
25. Personalized Healthcare and Adherence: Issues and challenges
Treatment Adherence
27 Stock Broker
- Stress
Dx: High blood pressure
Type A Personality
Rec: Relaxation Therapy
Stop Smoking
72
66
72
Change Profession No
Trouble breathing
Water on lungs
Obese from surgery
NoDx: Weight problem
Rec: Eat fruits/vegetables
Exercise
Obesity not from diet
Afraid of exercise
- Fears not breathing
Pain in stomach
Believes has ulcer
Dx: Psychosomatic pain
due to high stress
Rec: See psychiatrist
Patient believes she
has no Psychological
problem
No
PartialDizzy, Weak
- Due to cold
medication
Dx: Sudden stopping
of Inderal
Rec: Continue Inderal
- decrease dose
Back on Inderal
Weakness continues
Before Interaction
Physician Diagnosis
& Recommendation After Interaction AdherenceAge
26. Personalized Healthcare and Adherence: Issues and challenges
Signs and
SymptomsLay Person Physician
Interpretation of Patient Problem
by Patient and Physician
Wellness,
Health
Illness Disease
Restore
Normal
Physiology
Restore
Daily Life
Goals:
Disrupt
Daily Life
Disrupted
Physiology
27. Personalized Healthcare and Adherence: Issues and challenges
Challenge 1
Understanding What the Patient is
Thinking: Listening is Not Enough
29. Personalized Healthcare and Adherence: Issues and challenges
Cognition and the Challenge of
Communicating across cultures
Multiple medical systems
Scientific education + cultural belief
systems = ?
30. Personalized Healthcare and Adherence: Issues and challenges
Cognition and the Challenge of
Communicating across cultures
REASONING
ABOUT PROTEIN
ENERGY
MALNUTRITION
Pictures of various
forms of PEM
Verbal description of
symptoms Cognitive analysis
Sivaramakrishnan, M. & Patel, V.L. (1993) Reasoning about
childhood nutritional deficiencies by mothers in rural India: A
cognitive analysis. Social Science & Medicine, 37(7), 937-952
32. Personalized Healthcare and Adherence: Issues and challenges
food to sit in
the stomach
no food for
arms & legs
less food
(malnourished)
Marasmus
Kwashiorkor
enlarged stomach
tthin arms and legs
CAU:
CAU:
CAU:
ASSOC:
Mother with No Formal Schooling
throwing up
of food
indigestion
Indigestion perceived as primary cause
“Common sense” explanation for kwash belly
33. Personalized Healthcare and Adherence: Issues and challenges
Explanation by a Mother with Secondary
Level of Schooling
Marasmus
Jaundice
Body and eyes
become yellow
Large stomach, big
head, arms and legs
Take to doctor
to give injections
Take to elders for
traditional mantras,
one per week for 8 weeks
Give strict diet with
no oil for one month
Give lemon juice
in cooked pulses
and carrots
Liver problem
Food not
digested
Therapy based on local
reasoning
36. Personalized Healthcare and Adherence: Issues and challenges
Cough Syrup
• Over-the-counter cough medicine used in the
treatment of cough associated with common
cold
• Correct implementation involves a simple
procedure but a complex calculation in
determining the proper dosage
• Subjects had to execute a complex
quantification for a simple procedure
Patel,V.L. , Branch T, Arocha JA (2002) Errors in Interpreting
Quantities as Procedures: The Case of Pharmaceutical Labels.
International Journal of Medical Informatics; 65:193-211.
37. Personalized Healthcare and Adherence: Issues and challenges
Pharmaceutical Instructions
for Cough Syrup
Each teaspoonful (5ml) contains 15 mg
of dextromethorphan hydrobromide
U.S.P., in a palatable yellow, lemon
flavored syrup.
DOSAGE ADULTS: 1 or 2 teaspoonfuls
three or four times daily.
DOSAGE CHILDREN: 1 mg per kg of
body weight daily in 3 or 4 divided doses.
38. Personalized Healthcare and Adherence: Issues and challenges
Calculation of a Single Dose
For a 22-Pound Child
Calculations for a 22-pound child, where n= 3 :
1ハ teaspoon
5ハmillilitres
x
5ハmillilitres
15ハ milligrams
x
1ハmilligramハofハ medicine
1ハ kilogram ハofハbodyハweight
x 22 poundsx
1ハ kilogram
2.2ハpounds
x
1
totalハdaily ハdoseハinハmilligrams
=
10
15
teaspoons =
2
3
teaspoon
2
3n
teaspoon ntimes daily (where n = 3)=
2
3x3 tteaspoon, 3 times daily
=
10ハkilograms
15x3ハtimes ハdaiily
=
2
9
teaspoon, 3 times daily
39. Personalized Healthcare and Adherence: Issues and challenges
Results: Cough Syrup
– The majority of participants (66.5%) were unable
to correctly calculate the appropriate dosage of
cough syrup
– Even when calculations were correct, they were
unable to estimate the actual amount to
administer
– There were no significant differences based on
cultural or educational background (except PhDs)
40. Personalized Healthcare and Adherence: Issues and challenges
Dosage Accuracy for Cough Syrup
Accuracy
Percentage
0
10
20
30
40
50
60
70
Under dose Correct
dose
Slight
overdose
Extreme
overdose
English
Indian
Greek
41. Personalized Healthcare and Adherence: Issues and challenges
Think-Aloud Quotation #1
One milligram per kilogram of body weight. So 13, 13
daily, 13 milligrams it would be. One milligram per
kilogram? 13 kilograms let's say and one times 13 is 13
daily in three or four divided doses. So it would be four
doses, I guess, three milligrams each? How many
milligrams in a teaspoon? Oh, gosh, I said three
milligrams. Each teaspoonful there's five to a teaspoon.
Oh, I don't understand. Well, it wouldn't be a full
teaspoon it would be more like half a teaspoon, four
times a day.
42. Personalized Healthcare and Adherence: Issues and challenges
Think-Aloud Quotation #2
27 kilos, 27 milligrams? 27 milligrams
daily. Each teaspoon is 15 milligrams so
you want two teaspoons a day divided by
four. Hold it, two teaspoons a day divided
by three or four doses. So you are talking
either one-half to two-thirds a teaspoon,
depending on whether it's three or four
times a day.
43. Personalized Healthcare and Adherence: Issues and challenges
Think-Aloud Quotation #3
Each teaspoon contains 15 milligrams. Okay, for the
children I have to write the weight of the baby, 10
kilograms. I will give him only two teaspoons for the
day. Yeah, I give him only two teaspoons, two times a
day, because you see here 15 milligrams is one
teaspoon. So, one teaspoon is five ml contains 15
milligrams? Yeah, that's it. I give him only two, two
teaspoons.
45. Personalized Healthcare and Adherence: Issues and challenges
Summary and Challenges to Personalized Health
Care
How we think and make decisions create certain
challenges for successful acceptance of personalized
health care
– Nature and use of evidence by lay public is different
from designers of systems providing care:
Understand the users
– Understanding what the patient is thinking: Listening
is not enough: Thinking behind behavior (cognition)
– Traditional belief systems are powerful and they
influence decisions about individual health: Work
within the system rather than against them
46. Personalized Healthcare and Adherence: Issues and challenges
Personalized Healthcare & Adherence:
the role of technology
Bern Shen MD
MedInfo – Copenhagen
22 Aug 2013
Panel Discussion (2):
47. Personalized Healthcare and Adherence: Issues and challenges
Bern Shen, MD, MPhil. • Chief Medical Officer, HealthCrowd
• Member, Band of Angels
• Board of Directors, Clayton Christensen
Institute for Disruptive Innovation
• Board of Directors, Univ. of Iowa Research
Foundation
• Board of Advisors, Univ. of Iowa College of
Public Health
• Adjunct Assoc. Prof., Univ. of Iowa Colleges of
Medicine & Business
• Adjunct Asst. Prof., UCSF School of Pharmacy
• Ex-Board Chair, The Health Trust
• Ex-Intel (Chief Healthcare Strategist), Oracle,
HP, UCSF, UPMC, Yale
• Ex-Health Practice Lead, Institute for the
Future
47
48. Personalized Healthcare and Adherence: Issues and challenges
Agenda
• Personalization
• Adherence
• Some lessons learned from real-world projects
48
49. Personalized Healthcare and Adherence: Issues and challenges
Agenda
• Personalization
• Adherence
• Some lessons learned from real-world projects
49
50. Personalized Healthcare and Adherence: Issues and challenges
Healthcare more distributed & differentiated
50
One size fits all (e.g., blockbuster drug,
“70kg patient”)
Personalized medicine
51. Personalized Healthcare and Adherence: Issues and challenges
Many ways to personalize
Policies & interventions
Access to quality healthcare
Health statusHealth status
Behavior
Biology
Physical
environment
Social
environment
Technology
BehaviorBehavior
TechnologyTechnology
51
52. Personalized Healthcare and Adherence: Issues and challenges
Reception Acceptance Intentions Action
• Past behavior
• Demographics & culture
• Perceived health threat & susceptibility
• Perceived benefits & barriers
• Stereotypes & stigma
• Personality, moods & emotions
• Other individual differences
• Media or intervention exposure
• …
• Poverty
• Entrenched adversaries
• Built environment
• Geographic barriers
• …
Internal
External
Skills &
abilities
Environmental
constraints
Logic model
52
Time frame for impact
Weeks Months Years
Clinical & financial outcome
metrics
•Biometrics – e.g., weight, BP, glucose
•Visits to clinic, or ED
•Hospital admissions
•Procedure volumes
•Utilization & cost savings
•Newly enabled business models
Behavior change & subjective
indices
•Measures of self-efficacy
•Measures of disease knowledge
•Quality of life, depression
•Productivity, absenteeism
Process & proxy measures
•Engagement & response rates
•Number & types of health behaviors
•Program completion rates, f/u appointment
no-shows
•Health screening, HEDIS measures
•Streamlined workflow
Coaching
Patient
Outcomes
RemindersNew info MotivatorsReinforcers
Intelligent text messages
53. Personalized Healthcare and Adherence: Issues and challenges
Agenda
• Personalization
• Adherence
• Some lessons learned from real-world projects
53
54. Personalized Healthcare and Adherence: Issues and challenges
Why behavior matters
• Adherence is behavior
• High vs. low adherence → ~26% difference in
outcomes
• Behavior is a major determinant of health
54
000’s of deaths/year
Source: : Mokdad, et al. 2004. Actual causes of death in the United States, 2000. JAMA. 2004;291:1238-45.
56. Personalized Healthcare and Adherence: Issues and challenges
56
Source: Green, L. A., et al. (2001). "The ecology of medical care revisited." N Engl J Med 344(26): 2021-5.
63. Personalized Healthcare and Adherence: Issues and challenges
People are different
63
Individual stopped responding – but
still wanted to receive messages
Highlights the importance of the
right outcome measures
~40% overall response rate
65. Personalized Healthcare and Adherence: Issues and challenges
65
Hypothesis: Can a mobile messaging program reduce dropout & increase program
adherence among cardiac rehab patients?
This analysis was performed using data from our program, supplemented with data
from respected sources to estimate cost savings.
Analysis:
Results: Compared to the control group, patients in the intervention group
demonstrated 2x rehab completion, ¼ no-show rate at 3-month follow-
up appointment, better exercise tolerance, & lower depression scores
Increased rehab completion rate reduces utilization meaningful savings→
Entity: Hospital
Population: Commercial
+ Medicaid; Urban + Rural
Average age: 55
n = 100
English level: 6th
grade
Benefit to hospital:
Reduced 30-day
readmissions for AMI,
CABG, Stent, CHF
Cost savings: ~ $1,300
annual savings per member
66. Personalized Healthcare and Adherence: Issues and challenges
66
sensemaking
Source: Institute for the Future
"Both builders and users of… systems tend to think of
them simply as technical tools or problem-solving aids,
assuming them to be value-free. However, …the
reasoning embedded in such systems reflects cultural
values and disciplinary assumptions, including
assumptions about the everyday world of medicine.”
- D. Forsythe. 2001. Studying Those Who Study Us: An Anthropologist
in the World of Artificial Intelligence. p. 93.
1980 1990 2000 2010
67. Personalized Healthcare and Adherence: Issues and challenges
Agenda
• Personalization
• Adherence
• Some lessons learned from real-world projects
67
68. Personalized Healthcare and Adherence: Issues and challenges
Personal Informatics for Wellness:
An Interactive Analytics Framework for
Computer-Supported Collaborative Prevention
Pei-Yun Sabrina Hsueh, PhD, MIMS
MedInfo – Copenhagen
22 Aug 2013
Panel Discussion (3):
69. Personalized Healthcare and Adherence: Issues and challenges
Pei-Yun (Sabrina) Hsueh, PhD
Research Data Scientist, Wellness Analytics Lead, Health
Informatics Research Group
IBM T. J. Watson Research Center
IBM Invention Achievement Awards, Organization Committee of
Academy of Technology Conference & Healthcare and Life Science
Distinguished Speaker Series
Google European Anita Borg Scholar
Program Committee, ACM HLT, NAACL, EACL, CODATA Chronic
Disease Management and Independent Living for the Aged
Invited Session Chair, AHFE, ISREC, IEEE SOLI, CollaborateCom
Board of Director, Chinese Institute of Engineers Greater New York
Chapter
National Science Council Merit Award
Book Chapter/Journal Review: Artificial Intelligence, IGI Global
Privacy Protection Technologies in Business Organizations, IEEE
Intelligent Systems, Transactions on Knowledge and Data
Engineering, Statistical Analysis and Data Mining, IEEE Selected
Topics in Signal Processing, Journal of Natural Language Engineering
PhD in Informatics, University of Edinburgh;
Masters in Information Mgmt, University of California, Berkeley;
Bachelor in Computer Science, National Taiwan University
70. Personalized Healthcare and Adherence: Issues and challenges
Healthcare becoming Personal
1990 Empirical Medicine
Intuitive Medicine
Disruption will involve pushing more medicine into the precision category.
~ Clayton Christensen “The innovator’s Prescription”
Disease-Centric
Guideline
Precision Medicine
Degree of personalization
Degreeofcollaboration
(datadimension)
Data-Driven
Evidence
All patients with
same diagnosis
Patients receiving
alternative treatment
Patients receiving traditional
treatment
71. Personalized Healthcare and Adherence: Issues and challenges
From Genetic Determinants of Health to Personalized
Medicine and Prevention
• Personalized Medicine • Personalized Prevention
72. Personalized Healthcare and Adherence: Issues and challenges
72
Introducing Data-Driven Analytics into Personalized Services:
Improved Outcome and Reduced CostIndividualized Guideline Improved Clinical Outcomes
≈ 13% absolute risk reduction
Individualized Guideline Reduced Operational Costs
≈ 6,000 myocardial infarctions (MIs) and strokes prevented annually * $7,000 cost savings per person
≈ 420M US dollars saved in a US provider alone
Source:
Eddy, et al. (2011). Individualized Guidelines: The Potential for Increasing Quality and Reducing Costs. Annals of Internal Medicine, vol. 154, no. 9, p.627-634.
http://www.annals.org/content/154/9/627.abstract
72
73. Personalized Healthcare and Adherence: Issues and challenges
Delivery (Care flow determinant)
Nature (Endogenous determinant)
(e.g., genetics predisposition)
Nurture (Exogenous determinant) (e,g,
environment exposure, behavior
pattern, social circumstances)
30%
10%
60%
Cardiovascula
r disease
(73-83%)
(NHS, NEJM 2000)
Cardiovascula
r disease
(73-83%)
(NHS, NEJM 2000)
Type II Diabetes
(58-91%)
(Finland DPS, NEJM 2001, 2007)
(US NHS, 2000; CDC DPP, 2002)
(China Da-Qing, 2001)
Type II Diabetes
(58-91%)
(Finland DPS, NEJM 2001, 2007)
(US NHS, 2000; CDC DPP, 2002)
(China Da-Qing, 2001)
Cancer
(60-69%)
(HALE, JAMA 2004;
de lorgeril Arch Intern
Med, 1998)
Cancer
(60-69%)
(HALE, JAMA 2004;
de lorgeril Arch Intern
Med, 1998)
Personalized MedicinePersonalized Medicine
Personalized CarePersonalized Care
Personalized Prevention and
Disease Management
Personalized Prevention and
Disease Management
Eye complication
(76%), Kidney
complication (50%),
Nerve complication
(60%)
(UKPDS, US DCCT)
Eye complication
(76%), Kidney
complication (50%),
Nerve complication
(60%)
(UKPDS, US DCCT)
Cardiovascular
complication (42-57%)
(UKPDS, US EDIC)
Cardiovascular
complication (42-57%)
(UKPDS, US EDIC)
Holistic View of Determinants of Health to Personalized Services
Huge opportunity space for risk reduction:
Progress impeded by the lack of efficient personalization and validation techniquesProgress impeded by the lack of efficient personalization and validation techniques
SA Schroder. We can do better -
Improving the Health of the
Amarican People. NEJM
2007;357:1221-8.
74. Personalized Healthcare and Adherence: Issues and challenges
1990 Empirical Medicine
Intuitive Medicine
Personalized Service
Patient-Centric
Guideline
Disease-Centric
Guideline
Precision Medicine
Degree of personalization
Degreeofcollaboration
(datadimension)
Data-Driven
Evidence
Century of
behavior change
Healthcare becoming both Personal and Collaborative:
Two Concepts to be Introduced…
Amazon, Netflix, Pandora, and iTunes v.s. Wellness service providers.
What is the middle ground?
….. Thinking in the line of “Mass Customization”…
What these companies do not have?
….. Thinking in the line of “Personal Informatics”…
75. Personalized Healthcare and Adherence: Issues and challenges
System Approach to the Personalization Problem
Personal wellness data model
+ Hospital HIS
76. Personalized Healthcare and Adherence: Issues and challenges
76
Longitudinal
record
Personal
Wellness
Record
Personal
Wellness
Record
Personal
Wellness
Record
Clinical
Requirement
Guideline
Diabetes
CHF
Cardiovascular
Metabolic
Core Service Flow (As-Is Process)
76
76
Monitoring
Monitoring
Sensor
Transactionfeed
SmartDeviceApp
Compliancefeed
Clinical
Activity
Nutrition
Follow-up stage
76
77. Personalized Healthcare and Adherence: Issues and challenges
Value Proposition of Personalized Service
Core Service Flow (As-Is, To-Be)
As-Is
Process
As-Is
Process
Personalized
Service
Personalized
Service
Customer/Customer/
PatientPatient
To-Be Process: Personalized Services
(Consultation, Follow-Up)
To-Be Process: Personalized Services
(Consultation, Follow-Up)
Consultation
stage
Theme
#2
Theme
#2
Follow-up
stage
Theme
#3
Theme
#3
Theme
#1
Theme
#1
Value-adding process
Adherence
79. Personalized Healthcare and Adherence: Issues and challenges
Personalization: Core Issues Addressed & Remaining Questions
Remaining questions in each issueRemaining questions in each issue
• Individual difference
How to measure and validate?
What are the missing information at
individual level?
• Actionable recommendation
• How to translate dynamically changing,
multi-faceted adherence factors into a
patient-centric view?
• How to account for multiple dimensions
of wellness decision making?
• Adherence risk
• How to model incremental response?
• How to create differential response to
adherence exceptions in absence of
individual outcome data?
1
2
3
Customer/Customer/
PatientPatient
Adherence
Theme
#1
Theme
#1
Theme
#2
Theme
#2
Theme
#3
Theme
#3
Personalization for
risk stratification
(from population to
individual evidence)
Personalization for
risk stratification
(from population to
individual evidence)
Personalization for in-
context recommendation
(from disease-centric to
patient-centric)
Personalization for in-
context recommendation
(from disease-centric to
patient-centric)
Personalization for
adherence risk
mitigation
(from status-insensitive
to status-sensitive)
Personalization for
adherence risk
mitigation
(from status-insensitive
to status-sensitive)
80. Personalized Healthcare and Adherence: Issues and challenges
• Individual difference
• How to measure and validate?
• What are the missing information at
individual level?
• Actionable recommendation
• How to translate multi-faceted disease
risks into a patient-centric view?
• How to account for multiple criteria of
wellness decision making?
• Adherence risk
• How to model incremental response?
• How to create differential response to
adherence exceptions in absence of
individual outcome data?
Personalization: Core Issues Addressed & Analytics Components
Remaining questions in each issueRemaining questions in each issue Personalization analytics in responsePersonalization analytics in response
1
2
3
Quantifiable individual
difference
Actionable
recommendation
Risk-adverse
intervention target
Patient-centric
outcome-
maximizing
Patient-centric
outcome-
maximizing
Lift modeling for
proactive risk
mitigation
Lift modeling for
proactive risk
mitigation
81. Personalized Healthcare and Adherence: Issues and challenges
Summary
Importance of personalization in patient engagement
Clinical touch point identification for mass customization
Incorporating personal informatics tools for user modeling
Innovation opportunities in care delivery and patient engagement models
Interactive Analytics Scheme for Personalization services
PWR + HIS
Analytics Engine: Summarization Customization Engagement
Interaction Engine: user modeling important attribute solicitation/self-
assessment
Instant outcome measurement and feedback generation
Ongoing in-market experiments (pilots)
Personalized engagement and customer “stickiness”
Invention: Crowd-sourced DB and dynamic accretion of questions based on
patient status estimation
Sustainable value capture?
82. Personalized Healthcare and Adherence: Issues and challenges
Framework to accelerate personalized service design
Technologies to enhance wellness services
– Guide the identification of customization points in clinical workflow and
deployment of the Analytics and IM offerings
– Create new tools and infrastructure for client engagements
– Explore light-weight approach to connect the components (to prepare for future
cloud offerings)
New solutions and services
– Bring together clients and researchers to understand clinical touch points
– Demonstrate how to leverage customization points to engage users and possibly
improve health literacy and outcomes
Replicable patterns for patient engagement deployment
– Create ETL procedures to be repeatedly use in other provider settings
– Explore both hosted and internal deployment possibilities
Plug-in for other tools
– Create a recipe from data collection to summarization to customization to
engagement to outcome measurement
– Each component can be singled out as a standalone process for other tools
83. Personalized Healthcare and Adherence: Issues and challenges
Thank You
Merci
Grazie
Gracias
Obrigado
Danke
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Editor's Notes
I will briefly review the SEMINAL themes that emerged during this conference -- 31 years ago
Three instances of weakness PRIOR to cessation of Inderal, however patient hypothesis was that her weakness was due to the cold medication
Cessation of Inderal was very salient, and physician selectively focused on that detail. Unfortunately, the diagnosis of anemia was missed.
Lay subjects respond to alterations in lifestyle, not to signs and symptoms Physicians act on signs and symptoms to relieve symptoms
Expensive Heavyweight Centralized Requires experts to use Data primarily biological… … collected in artificial setting (hospital lab) Vs. Cheaper Lightweight Distributed User-friendly Bio, behavioral, psychosocial data… … collected in situ http://encarta.msn.com/media_461544834/IBM_System_360_Mainframe_Computer.html www.ipunplugged.com/news.asp?mi=5.1&articlekey=47 http://www.eng.ox.ac.uk/samp/diabetes.html http://www.dkimages.com/discover/Home/Health-and-Beauty/Medical-Examinations/Pregnancy-Tests/Pregnancy-Tests-03.html
http://www.faceresearch.org/demos/average
Adapted from Journal of Communication pages S184-S201, 4 AUG 2006 DOI: 10.1111/j.1460-2466.2006.00289.x http://onlinelibrary.wiley.com/doi/10.1111/j.1460-2466.2006.00289.x/full#f1 Elements of ELM - https://msbfile03.usc.edu/digitalmeasures/priester/intellcont/2009MediaChapterPettyBrinolPriester-1.pdf
http://jama.ama-assn.org/cgi/content/abstract/291/10/1238 http://journals.lww.com/lww-Medicalcare/Abstract/2002/09000/Patient_Adherence_and_Medical_Treatment_Outcomes_.9.aspx – met-analysis of 63 studies of mostly medical adherence studies
~54M Americans with disabilities ~7M Americans >15 years old limited in ≥ 1 ADLs Informal caregiving ~$200B/year in US 1.4M receiving home health care
JNC7 guideline 2012 ADA EASD Type ii Diabetes guideline Stratified medicine definition: Defines groups of patients that could derive especially big benefits from a certain therapy. E.g., based on certain genetic traits of a tumor, we can now predict very precisely for many types of cancer whether or not the given patient would benefit from chemotherapy. Biobank projects Pan-European biobanking Biomolecular Resource Research Infrastructure Standardization Impedence by the lack of efficient personalization and validation techniques Disruption will involve pushing more medicine into the precision category . ~ Clayton Christensen “The innovator’s Prescription” Companies like Amazon, Netflix, Pandora, Rhapsody, and iTunes offer consumers virtually unlimited choices in real time. What I think mass customization allows is a company that operates in a physical goods environment (i.e. http://www.bluewardrobe.com) the ability to offer the customer anything. Mass customization allows the deployment of a “long tail” strategy without the burden of physical inventory. Companies that can match their product offerings to the true shape of the demand curve (a curve that incorporates both “hits” as well as “niches”) will be able to offset any initial inconvenience that mass customization inherently possesses. Today’s customer-facing technologies are cheaper and more social. Configurators, which help customers co-design their customized product purchases, are cheaper, better, and more ubiquitous than ever. They can finally be integrated directly into a Facebook site, which will facilitate social sharing and group co-design activities. Tomorrow’s customer-facing technologies will be revolutionary. Technologies empowering customers to design their own products will become richer and more plentiful. For example, Microsoft’s Xbox Kinect shows the pathway towards the ultra-configurator: a device that can measure the contours of your body and allow you to use gestural inputs to design products. (I draw pin-stripes on a suit I’m co-designing; I size the steering wheel of a car I’m customizing; etc.) The richer the configuration experience, the more appealing mass customized products will become – and these experiences will indeed be much richer. Platforms are promoting discovery, fulfillment, and scale. Back-end systems like supply chain software provider Archetype Solutions offer better production-side IT analytics. And explicit platform providers for products, like Ponoko, Zazzle, or Spreadshirt, are popularizing, syndicating, and empowering an ecosystem of partners to devise their own customized products. 80 percent of mass customization is about brand building and for consumer goods mass customization is utilized primarily to increase existing sales of mass produced products. NIKE ID NIKEiD is a service provided by the sportswear company NIKE allowing customers to customize clothing purchased from Nike. The customer becomes the designer as they change and add a personal look and feel to a selected item. The service can be accessed both online from their homepage and in select physical branches. The service was launched initially in 1999 and could only be accessed through their website. It provided customers the ability to choose from a limited range of different material and colors to develop their own style of tennis shoe. Intuitive medicine is care for conditions loosely diagnosed by symptoms and treated with therapies of unclear efficacy. intuitive medicine, involves highly trained specialists handling difficult diagnoses and treatment. The second, empirical medicine, deals with the expensive world of chronic care and trial-and-error treatment. Lastly, precision medicine is where the diagnosis and therapy are known. Treatment can be made routine and moved out of the hospital. Precision medicine is the delivery of care for diseases that can be precisely diagnosed and with predictable, evidence-based treatments. The NAS report calls for "precision medicine," — the use of genomic, epigenomic, exposure, and other data to define individual patterns of disease, potentially leading to better individual treatment. If this sounds like personalized medicine, it is — but more so. With the over-use of 'personalized medicine' in a wide variety of contexts, "precision medicine" conveys a more accurate image of diagnosis that is person-centered and multifaceted. Will subdividing syndromes based on molecular signatures, neuroimaging patterns, inflammatory biomarkers, cognitive style, or history give us subgroups that are more responsive to certain medications or psychosocial treatments? Personalized Healthcare Accelerate the emergence of disruptive innovations in health care by developing and curating a broad, multi-stakeholder approach that addresses all four primary elements of disruption. Provide coordination and orchestration of stakeholder efforts at the scientific/technical level, the commercial/industry ecosystem level, and the societal/social level. Read more: Precision medicine could be the key to better, cheaper care - FierceHealthcare http://www.fiercehealthcare.com/story/precision-medicine-could-be-key-better-cheaper-care/2011-02-28#ixzz26mMPyKB8 As the P4 Medicine predicted, personalization will transform the healthcare industry. It will impact how we live and how businesses operate profoundly Personalized healthcare provides: • It is personalized; it is based on an understanding of how genetic variation drives individual treatment. • It is predictive; it is able to identify what conditions a person might contract in the future and how the person will respond to a given treatment, enabling the development of a tailored health strategy. • It is preventive; it facilitates a proactive approach to health and medicine, which shifts the focus from illness to wellness. • It is participatory; it empowers patients to make informed choices and take responsibility for their own health. Clayton: Hospitals become focused solution shops, practicing intuitive medicine Focused value-adding process hospitals & clinics provide procedures after definitive diagnosis Facilitated networks take dominant role in the care of many chronic diseases
Kaiser Permanente – Reduce 5-year CVD risk 2.4 times more than EHR+panel support tool alone ( 13% absolute risk reduction) 6,000 myocardial infarctions (MIs) and strokes prevented annually if applied throughout KP ( 43% increase over JNC7 guideline for the same cost) $420M annual net savings if applied throughout KP Fix: Individualized Guideline Primary Diabetes RISK: E.g., DPP Secondary and Tertiary Diabetes RISK: E.g., UKPDS, FIN-D2D Cardiovascular disease RISK: E.g., Individualized guideline for hypertension control pilot in Kaiser & Boston Health Group
Source: SA Schroder. We can do better - Improving the Health of the Amarican People. N Engl J Med 2007;357:1221-8. Stampfer MJ, Hu FB, Manson JE, Rimm EB, Willett WC. Primary prevention of coronary heart disease in women through diet and lifestyle. N Engl J Med 2000;343:16-22. Tuomilehto J. et at. N Engl J Med 2001; 344:1343-1350 any cardiovascular disease event 42% reduced risk nonfatal heart attack, stroke, or death from cardiovascular causes 57% reduced risk 1. Finland National Type II Diabetes Prevention Programme (Saaristo et al., 2007) 5 hospital districts, covering a population of 1.5 million, during the years 2003-2007. Test the hypothesis whether T2D can be prevented or at least delayed in high-risk subjects by life-style modification or by combining lifestyle intervention and drug treatment 2. CDC's Diabetes Prevention Program, 2002 27 clinical centers around the United States 3,234 study participants were overweight and had pre-diabetes the average follow-up is 2.8 yrs Test whether lifestyle intervention group—those receiving intensive individual counseling and motivational support on effective diet, exercise, and behavior modification -- reduced their risk of developing diabetes
are the high-level participation of users and channels of deep user understanding Mass customization is the method of "effectively postponing the task of differentiating a product for a specific customer until the latest possible point in the supply network." (Chase, Jacobs & Aquilano 2006, p. 419). A recent study by a group of consultants at McKinsey* put a figure on the amount that is lost by producing cars to meet a demand that never materialises. Eliminating such losses (and the associated discounts needed to sell off excessive stocks of finished cars) could, according to McKinsey, be worth up to $80 billion a year to the car manufacturers. Nissan Motor has estimated that converting entirely to BTOcould save up to $3,600 per vehicle. Nevertheless, despite some concerted efforts, notably among car makers in Europe, the goal of the “three-day car” (as one research project dubsBTO vehicles) could still be ten years distant. Companies like Amazon, Netflix, Pandora, Rhapsody, and iTunes offer consumers virtually unlimited choices in real time. What I think mass customization allows is a company that operates in a physical goods environment (i.e. http://www.bluewardrobe.com) the ability to offer the customer anything. Mass customization allows the deployment of a “long tail” strategy without the burden of physical inventory. Companies that can match their product offerings to the true shape of the demand curve (a curve that incorporates both “hits” as well as “niches”) will be able to offset any initial inconvenience that mass customization inherently possesses. Today’s customer-facing technologies are cheaper and more social. Configurators, which help customers co-design their customized product purchases, are cheaper, better, and more ubiquitous than ever. They can finally be integrated directly into a Facebook site, which will facilitate social sharing and group co-design activities. Tomorrow’s customer-facing technologies will be revolutionary. Technologies empowering customers to design their own products will become richer and more plentiful. For example, Microsoft’s Xbox Kinect shows the pathway towards the ultra-configurator: a device that can measure the contours of your body and allow you to use gestural inputs to design products. (I draw pin-stripes on a suit I’m co-designing; I size the steering wheel of a car I’m customizing; etc.) The richer the configuration experience, the more appealing mass customized products will become – and these experiences will indeed be much richer. Platforms are promoting discovery, fulfillment, and scale. Back-end systems like supply chain software provider Archetype Solutions offer better production-side IT analytics. And explicit platform providers for products, like Ponoko, Zazzle, or Spreadshirt, are popularizing, syndicating, and empowering an ecosystem of partners to devise their own customized products. 80 percent of mass customization is about brand building and for consumer goods mass customization is utilized primarily to increase existing sales of mass produced products. NIKE ID NIKEiD is a service provided by the sportswear company NIKE allowing customers to customize clothing purchased from Nike. The customer becomes the designer as they change and add a personal look and feel to a selected item. The service can be accessed both online from their homepage and in select physical branches. The service was launched initially in 1999 and could only be accessed through their website. It provided customers the ability to choose from a limited range of different material and colors to develop their own style of tennis shoe. Intuitive medicine is care for conditions loosely diagnosed by symptoms and treated with therapies of unclear efficacy. intuitive medicine, involves highly trained specialists handling difficult diagnoses and treatment. The second, empirical medicine, deals with the expensive world of chronic care and trial-and-error treatment. Lastly, precision medicine is where the diagnosis and therapy are known. Treatment can be made routine and moved out of the hospital. Precision medicine is the delivery of care for diseases that can be precisely diagnosed and with predictable, evidence-based treatments. The NAS report calls for "precision medicine," — the use of genomic, epigenomic, exposure, and other data to define individual patterns of disease, potentially leading to better individual treatment. If this sounds like personalized medicine, it is — but more so. With the over-use of 'personalized medicine' in a wide variety of contexts, "precision medicine" conveys a more accurate image of diagnosis that is person-centered and multifaceted. Will subdividing syndromes based on molecular signatures, neuroimaging patterns, inflammatory biomarkers, cognitive style, or history give us subgroups that are more responsive to certain medications or psychosocial treatments? Personalized Healthcare Accelerate the emergence of disruptive innovations in health care by developing and curating a broad, multi-stakeholder approach that addresses all four primary elements of disruption. Provide coordination and orchestration of stakeholder efforts at the scientific/technical level, the commercial/industry ecosystem level, and the societal/social level. Read more: Precision medicine could be the key to better, cheaper care - FierceHealthcare http://www.fiercehealthcare.com/story/precision-medicine-could-be-key-better-cheaper-care/2011-02-28#ixzz26mMPyKB8 As the P4 Medicine predicted, personalization will transform the healthcare industry. It will impact how we live and how businesses operate profoundly Personalized healthcare provides: • It is personalized; it is based on an understanding of how genetic variation drives individual treatment. • It is predictive; it is able to identify what conditions a person might contract in the future and how the person will respond to a given treatment, enabling the development of a tailored health strategy. • It is preventive; it facilitates a proactive approach to health and medicine, which shifts the focus from illness to wellness. • It is participatory; it empowers patients to make informed choices and take responsibility for their own health. Clayton: Hospitals become focused solution shops, practicing intuitive medicine Focused value-adding process hospitals & clinics provide procedures after definitive diagnosis Facilitated networks take dominant role in the care of many chronic diseases
PWR---> clinical requirements -- user preferences -- personalized plan (activity, nutrition, clinical) - compliance plan
How do we proactively leverage patient data to transform guidelines into actionable insights based on risk and disease progression? How do we generate a specific personalized plan ? How do we monitor effectiveness, adherence risk and adaptation points?
A representation of all the interactions of the key stakeholders (Mary, her doc, her case manager, her family..) How do we help? Our proposal: A risk mediator that can trace case history, provide proxy measurements that summarize exception urgency, and sort the case exceptions by urgency Saving costs of handling exceptions and improving customer retention. At planning stage Infer Personalization matrix: Identify the proxy measure of intervention need (e.g., the likelihood of entailing hypoglycemia episode) and the personalization matrix (e.g., exception model in the fitness and dietary intake intervention domain for various user subpopulations) appropriate for the determination of such need Exception importance: tf*idf, correlation (chi), information gain Dynamic data collection: Discover what sources of compliance info (other than the initial vendor) are pertinent, and relay related data to the compliance manager. Measure personal intervention need : (expected risk and incompliance propensity) Monitor wellness context changes: detect significant changes in context (e.g., cardio zoning improvement) At personalization matrix analytics stage: Model the occurrence of exceptions in the intervention domain Keep track of the summative effects on intervention need : the summation of the effects of a set of low frequency variants across a variety of lifestyle interventions, each conferring a moderate but readily detectable increase in relative risk. Infer personalization matrix by aggregating the set of exceptions that are commonly seen in the high-need group but rarely found in the low-need group.
How to estimate a target patient’s risk levels and identify personal risk factors based on relevant risk group data? How “personalisable” is a target patient? What are the patient information missing for reliable personalization How do we proactively leverage patient data to transform guidelines into actionable insights based on risk and disease progression? Local risk factor analysis, Personalizable indicator, Active characterization of patient wellness : How do we generate a specific personalized plan ? How do we monitor effectiveness, adherence risk and adaptation points? What is the proxy measure of ind. diff?
How do we proactively leverage patient data to transform guidelines into actionable insights based on risk and disease progression? Local risk factor analysis, Personalizable indicator, Active characterization of patient wellness : How do we generate a specific personalized plan ? How do we monitor effectiveness, adherence risk and adaptation points? What is the proxy measure of ind. diff?