Distruptive Innovation in Health Care

1. CONSUMER HEALTH INFORMATICS & COMMUNICATION LABORATORY
Where Health Care and
Digital Revolution Intersect
disruptive innovation in health care
James G. Boram Kim
Consumer Health Informatics & Communication (CHIC) Laboratory
Seoul National University
james@snu.ac.kr
Mini Nursing Informatics Symposium · Tzu Chi College of Technology, Taiwan · June 26th, 2014

2. The World has been Changed: Banking

3. The World has been Changed: Banking

4. The World has been Changed: Traveling

5. The World has been Changed: Research

6. The World has been Changed: Medical Practice

7. The World has been Changed: Medical Practice

8. Digital [R]Evolution in Health Care

9. Health Care Crisis
$0
$325
$650
$975
$1,300
3.5%
4.4%
5.3%
6.1%
7.0%
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
Taiwan (% of GDP)
Taiwan (Expenditure Per Capita)
Not Directly
Related
Health Statistics in Taiwan 2010 & OECD Health Statistics 2013

10. Health Care Crisis
$0
$550
$1,100
$1,650
$2,200
3.5%
4.6%
5.8%
6.9%
8.0%
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
Taiwan (% of GDP)
Korea (% of GDP)
Taiwan (Expenditure Per Capita)
Korea (Expenditure Per Capita)
Health Statistics in Taiwan 2010 & OECD Health Statistics 2013
Not Directly
Related

11. Health Care Crisis
$0
$2,250
$4,500
$6,750
$9,000
3.5%
7.1%
10.8%
14.4%
18.0%
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
Taiwan (% of GDP)
Korea (% of GDP)
U.S. (% of GDP)
Taiwan (Expenditure Per Capita)
Korea (Expenditure Per Capita)
U.S. (Expenditure Per Capita)
Health Statistics in Taiwan 2010 & OECD Health Statistics 2013
Not Directly
Related
OECD Average in 2011
9.3% of GDP
$3,322 Per Capita

12. The Innovator’s Prescription: Disruptive Innovations
C.M. Christensen, The Innovator’s Dilemma: When New Technologies Cause Great Firms to Fail, 1997
Performance
Time
Sustaining Innovations
Disruptive Innovations
Most Demanding
Customers
Least Demanding
Customers

13. Business Models in Health Care
Based on Jason Hwang’s Work
Laboratory
Services
SpecialtyCare
Im
aging
Services
Clinical Research
and Training
Data
Collection
and
W
arehousing
SurgicalSuites
Solution Shops
- Fee for Service
• Consulting Firms
• High-end Law Firms
• R&D Organizations
• Diagnostic Activities of Hospitals
Value-adding
Process Businesses
- Fee for Outcome
• Retailing
• Manufacturing
• Food Services
• Medical Procedures
Facilitated
User Networks
• eBay
• Insurance
• Education
• Telecommunication
• D-Life (for diabetes patients & families)
- Membership and/or Advertising
• Regulations
• Licensure and Accreditation
• Cultural Resistance
• Payment and Reimbursement
Policies

14. Do We Need Doctors or Algorithms?
“
”
By 2025 more data-driven, automated health care will displace up to 80% of
physicians’ diagnostic and prescription work. It will AMPLIFY physicians by
arming them with more complete, synthesized, and up-to-date research data, all
leading to better patient outcomes.
600,000Pieces of Medical Evidence
1,500,000
Patient Records
2,000,000
Pages of Text
from 42Medical Journals
and Clinical Trials
VS
90%Successful
Diagnosis Rate
50%Successful
Diagnosis Rate
160
Hours of Reading a Week
Just to Keep Up with
New Medical Knowledge
as It’s Published

15. When the Doctor is Not Needed
Based on a New York Times Editorial Entitled “When the Doctor is Not Needed”
”
Pharmacists
“Pharmacists can start, stop or
adjust medications, order and
interpret laboratory tests, and
coordinate follow-up care.
”
Nurse Practitioners
“Substantial evidence shows that
nurse practitioners are as
capable of providing primary
care as doctors and are
generally more sensitive to what
a patient wants and needs.
”
Retail Clinics
“The retail clinics treat common
conditions like ear infections,
administer vaccines and
perform simple laboratory tests.

16. Who is the Real Medical Expert?
“
”
When we say patient-centered medicine, what we
usually mean is the contrast between a patient-
centered approach versus an approach where the
doctor and health system is in the center and the
patient is orbiting around. But, I think implicit in
most of our words, when we say this, is still the
notion that expertise is flowing from the
healthcare system to the patient.

17. Who is the Real Medical Expert?
“
”
In many cases, we have patients who are not just
experts in what they feel and what they
experience, but experts in the science of their
disease. […]
Patients often become micro-experts on their
disease and treatment.

18. The Rise of e-Patients
Pew Research Center’s Internet & American Life Project, 2013
engaged when they seek to access their own health information
enabled when they have access to their own health information
equipped when they understand their own health information
then empowered to achieve self-management of their care
“ ”
You are already your own doctor.
72%
of U.S. Internet users say they looked online
for health information within the past year(62% of U.S. adults)
7 10in
U.S. adults have tracked a health indicator
for themselves or for someone else
Of those, 34% share their health tracking records
or notes with another person or group

19. Search: Gets Deeper and More Personalized
Based on Matthew Holt’s Evolving View of a Moving Target

20. Communities: Providing Support, Answering Questions, Aggregating Data, and Tracking Outcomes
Based on Matthew Holt’s Evolving View of a Moving Target

21. Tools: Unlocking Databases with New Interface and Analytics
Based on Matthew Holt’s Evolving View of a Moving Target

22. Health 2.0: Better Integration of Data with Content
Search
Social
Networks
Tools
Transaction
Data
Content
Based on Matthew Holt’s Evolving View of a Moving Target
“ ”
All with the result of patients increasingly guiding their own care.

23. Gimme My“Damn”Data!

24. OpenNotes: Sharing Clinicians’Notes with Patients
1.8million
Over
So Far
92%
Up to
of Patients
in OpenNotes Study
OpenedTheir Notes
60%
More than
of Patients
Reported Doing Better with
Taking Medications as Prescribed
Because of Open Notes

25. Data Liquidity: When Data Flows Faster and More Freely
“
”
Consumers are managing bank accounts,
investments, and purchases on-line, and many
turn to the Web for gathering information about
medical conditions; they will expect this level of
control to be extended to online medical
portfolios.
Your Health Score
Every area of your life affects your overall health. Your healthscore helps you understand how
you’re doing and where there is room for improvement.
72
Completing even the simplest of tasks can improve
your overall health
IMPROVE YOUR HEALTH!
Stop smoking for good
Lower your blood pressure
+10
Make a medicine plan
Doing so can lower your risk for heart attack
+5
Schedule your annual physical
Make sure to update your plan of care
+3
Ellen Ross
D.O.B: 03.07.60
Age: 52
Gender: Female
Phone: 816.555.1229
Language(s) spoken: English
Email: e.ross@gmail.com
Name of Provider: Ashby Medical Center
Address: 1002 Healthcare Dr, Portland, OR 97266
Telephone: 415.555.1200
HEALTH RECORD
Coronary Heart Disease ACTIVE CONDITIONS & TREATMENTS
DIAGNOSIS
Chopidogrel (Plavix)
Prevent Blood Clots
Astrovastatin (Lipitor)
Lowers Cholesterol
Aspirin
Prevent Blood Clots
Preventative Medicine Plan
Cardiovascular Rehabilitation
(exercise plan)
OUTCOME
Cholesterol and
Hypertension fall within
acceptable ranges.
OUTCOME
SEPT 26, 2011
Heart attack caused by
100% blockage to right
artery.
Cholesterol
(Lipid Panel) Test
OCT 26, 2012
Routine Cholesterol
(Lipid Panel) Test
ORDERED
PRESCRIBED MEDICINES
LIFESTYLE CHANGES
Daily Cardiovascular Exercise
Low Fat / High fiber diet
Maintain healthy weight
Physician: Dr. Tim LeePhysician: Dr. Tim Lee
LAST OFFICE VISITCURRENT TREATMENT
PAGE 1 OF 2LAST UPDATED NOV 30 2012
It is important to repeat these steps every day to maintain good health.
My Medicine Plan
NAME OF MEDICATION
DAILY
TOTAL
Liptor
Enteric-Coated Asprin
Plavix
Toprol
Fish Oil
20 mg
81 mg
75 mg
25 mg
325 mg
--
--
--
--
325 mg
20 mg
--
--
--
325 mg
40 mg
81 mg
75 mg
25 mg
975 mg
BEFORE BREAKFAST WITH LUNCH AT BEDTIME
Lipid Panel (mm/Hg)
MY GOAL
249
60
76
112
95
Below 200
Above 40
Above 130
Below 150
Below 70
225
55
92
124
82
180
45
103
130
68
185
58
132
136
6
Total Cholesterol
HDL
Cholesterol, NON-HDL
Triglyceride
LDL
LAB RESULTS
MAY 2012 JUN 2012 JULY 2012 SEP 2012
Body and Test Results
VITALS MY GOAL
115 / 77
78
198
120/80 (resting)
60 - 90 (resting)
150 - 170
116 / 72
72
195
112 / 75
77
192
115 / 73
84
195
Blood Pressure
Heart Rate
Weight
(mg/dL)
(bpm)
(pounds)
MAY 2012 JUN 2012 JULY 2012 SEP 2012
ALLERGIES
SEVERITYREACTIONNAME OF ALLERGY
Bee Stings
Penicillin
Codeine
Anaphylactic Shock
Hives
Shortness of Breath
Severe
Moderate to severe
Moderate
PAGE 2 OF 2LAST UPDATED NOV 30 2012
JU HA N SONIN
Sonin, Juhan
22 Surry Rd
Arlington, MA 02476
617 504 3390
juhan@goinvo.com
HealthCard
LANGUAGE MARITAL STATUS RELIGION
English Married Atheist
VISION ALERGIES MEDICATIONS VISION
20/15 None None 20/15
HEALTHPLAN
Harvard Pilgrim
POLICY NUMBER
H468798902
1972.022.64.7489.JPS
SEX
M
HGT
5-10
WGT
199 lbs
DOB
1.Mar.1972, 40yo
GUARDIAN CONTACT
Kate Sonin
Same address
617 548 1769
ktfresh@gmail.com
PRIMARY CARE PHYSICIAN
David Ives, MD
781 672 2250
VACCINATIONS
Tetanus Hepatitis B Typhoid
TB Diphtheria Meningeal
MMR Influenza Smallpox
Hepatitis A Polio Yellow Fever
United States of America
A+
84
Blood
Pressure
Glucose
HDL
LDL
Triglycerides
Sleep
Happiness
Weight
Alcohol, Drugs
Environment
Medications
Exercise
Nutrition
Waist
Circumference
Vaccinations
Diabetes
Monitor Blood Sugar, Take Insulin 3x daily
CONDITIONS
High Blood Pressure
Exercise 1hr day to reduce weight and waist circumference.
Lose 10 pounds
Eat 700 less calories/day. Reduce saturated fat to 16 grams/day.
Torn bicep procedure
Keep thumb straight continually by splint and tape until 24.May.
Next Appointment
12.May.2013, Check-up Data current as of 29.Nov.2012
WEIGHT
199 lbs
GLUCOSE
101 mg/dl
HDL
35 mg/dl
WAIST CIRCUMFERENCE
34 in
BLOOD PRESSURE
117/79 mmHg
LDL
128 mg/dl

26. Quantified Self: Self Knowledge through Self-tracking

27. Quantified Self: Self Knowledge through Self-tracking

28. Quantified Self: Self Knowledge through Self-tracking

29. Self-experimentation: Single-Subject (“N-of-1”) Trial
Usual
Care
100 People 50 People
Symptoms
Symptoms
Experimental
Treatment
50 People Population
Based on Ida Sim’s Work

30. Self-experimentation: Single-Subject (“N-of-1”) Trial
Usual
Care
100 People 50 People
Symptoms
Symptoms
Experimental
Treatment
50 People Population
Me
Individual
Usual
Care
Experimental
Treatment
Usual
Care
Experimental
Treatment
Symptoms Symptoms
Usual
Care
Experimental
Treatment
Based on Ida Sim’s Work

31. Self-experimentation: Single-Subject (“N-of-1”) Trial
Seth Robert measured his arithmetic speed daily:
how fast he does simple arithmetic problems, such as 3+4
Several years ago, he discovered that butter — more precisely,
substitution of butter for pork fat — made him faster.

32. Patient Self-Care: Home Hemodialysis
Based on Joseph Cafazzo’s Work

33. Patient Self-Care: Home Hemodialysis
Based on Joseph Cafazzo’s Work
Improved Health Outcomes Cost-Effective ModalityPatient Autonomy

34. Patient Self-Care: Home Hemodialysis
Based on Joseph Cafazzo’s Work
Cost-Effective ModalityPatient Autonomy
Normalization of Blood Pressure without the Need for
Anti-Hypertensive Medications
Normalization of Abnormal Wall Thickness of the Heart
Restoration of Impaired Heart Function
Improvement in Peripheral Circulation
Improvement in Sleep Quality
Improvement in Nutritional Determinants
Elimination of Dietary Restriction
Improved Health Outcomes

35. Patient Self-Care: Do-It-Yourself Hemodialysis
“
”
As long as you have a high school degree, understand the
principle of dialysis, follow the operational instructions
and keep a close watch during the process, nothing
should go wrong. […] The most important part of the
machine is the filter, and I can use each one eight times.
A new filter costs $17, while a proper medical machine
can run into hundreds of thousands of dollars. […] When
I told the doctors what I was doing, they said I was crazy.

36. Peer-to-Peer Health Care: Patients Like Me
15in
U.S. Internet users have gone online to
find others like them
People living with chronic and rare conditions are
significantly more likely to do this.
Pew Research Center’s Internet & American Life Project, 2011
“What is extremely difficult about having a kid with
Kawasaki disease, before the diagnosis, is just the not
knowing.

37. Peer-to-Peer Health Care: Patients Like Me
Lithium delays progression of amyotrophic
lateral sclerosis
Francesco Fornai*†‡
, Patrizia Longone§
, Luisa Cafaro†
, Olga Kastsiuchenka*, Michela Ferrucci*, Maria Laura Manca¶
,
Gloria Lazzeri*, Alida Spalloni§
, Natascia Bellioʈ
, Paola Lenzi*, Nicola Modugno†
, Gabriele Siciliano¶
, Ciro Isidoroʈ
,
Luigi Murri¶, Stefano Ruggieri†, and Antonio Paparelli*
*Department of Human Morphology and Applied Biology, and ¶Department of Neuroscience, Clinical Neurology, University of Pisa 56100 Pisa, Italy;
†Istituto Neurologico Mediterraneo, Istituto Di Ricovero e Cura a Carattere Scientifico Neuromed, 86077 Pozzilli (IS), Italy; §Molecular Neurobiology Unit,
Santa Lucia Foundation, 00179 Rome, Italy; and ʈDepartment of Medical Sciences, University of Novara, 28100 Novara, Italy
Edited by Thomas C. Su¨ dhof, University of Texas Southwestern Medical Center, Dallas, TX, and approved December 21, 2007 (received for review
August 24, 2007)
ALS is a devastating neurodegenerative disorder with no effective
treatment. In the present study, we found that daily doses of
lithium, leading to plasma levels ranging from 0.4 to 0.8 mEq/liter,
delay disease progression in human patients affected by ALS. None
of the patients treated with lithium died during the 15 months of
the follow-up, and disease progression was markedly attenuated
when compared with age-, disease duration-, and sex-matched
control patients treated with riluzole for the same amount of time.
In a parallel study on a genetic ALS animal model, the G93A mouse,
we found a marked neuroprotection by lithium, which delayed
disease onset and duration and augmented the life span. These
effects were concomitant with activation of autophagy and an
increase in the number of the mitochondria in motor neurons and
suppressed reactive astrogliosis. Again, lithium reduced the slow
necrosis characterized by mitochondrial vacuolization and in-
creased the number of neurons counted in lamina VII that were
severely affected in saline-treated G93A mice. After lithium ad-
ministration in G93A mice, the number of these neurons was
higher even when compared with saline-treated WT. All these
mechanisms may contribute to the effects of lithium, and these
results offer a promising perspective for the treatment of human
patients affected by ALS.
autophagy ͉ clinical study ͉ G93A mice ͉ morphological analysis
ALS is a devastating neurodegenerative disorder with no
effective treatment that usually leads to death within 3–5
years from diagnosis (11 months for the bulbar form) (1). ALS
occurrence is primarily (90%) sporadic, while only 10% is
familial (fALS). Approximately 20% of fALS are due to muta-
tions of the gene coding for the enzyme copper–zinc superoxide-
dysmutase (SOD1) (2). Transgenic mice over expressing the
human mutant SOD1 develop a pathology that is very similar to
that seen in ALS patients [see supporting information (SI) Text
for a comparison]. Studies in animal models or in vitro led to the
identification of a variety of alterations in ALS motor neurons
(MN) (1, 3, 4); however, other cells in the spinal cord besides MN
are affected (5–8). For instance, a class of interneurons die
either before or concomitantly with MN, as found in mice (9, 10)
and postulated in humans for Renshaw-like cells (11). Again,
glial cells participate in the deleterious interplay leading to MN
degeneration (6–8).
After the generation of the SOD1 ALS mouse models,
attempts have been made to find effective treatments. However,
so far, none of these trials has led to effective clinical outcomes.
Lithium is a compound used as a mood stabilizer, which is
neuroprotective in a variety of disease models (12, 13), such as
brain ischemia (14) and kainate toxicity (15). The ability of
lithium to promote autophagy, through the inhibition of the
inositol-monophosphatase 1 (16–18), together with the protec-
tive effects of autophagy in neurodegeneration (19–22),
prompted us to test the neuroprotective effects of lithium in the
G93A ALS mouse model. Based on the promising data, we
obtained in mice we quickly moved into a clinical trial, which is
now at the end of its second year.
Results
Effects of Lithium on Disease Duration and Survival in G93A Mice.
G93A male mice were treated daily with lithium carbonate (1
mEq/kg, i.p.), starting at 75 days of age. Lithium treatment
prolonged the mean survival time from 110.8 Ϯ 5.0 days (n ϭ 20)
to 148 Ϯ 4.3 (n ϭ 20, Ϸ36% of the life span of these mice; Fig.
1a; P Ͻ 0.001) and, most importantly, increased disease duration
(from a mean of 9 days to Ͼ38 days, Ͼ300%; Fig. 1b; P Ͻ 0.05)
compared with the G93A mice treated with saline. Even when
lithium treatment was started at the onset of motor symptoms,
the increase in disease duration was still comparable (data not
shown). More specifically, lithium delayed the onset of paralysis
and limb adduction (Fig. 1c) and significantly improved addi-
tional tests we report in SI Fig. 6, such as rotarod, grip strength,
and stride length.
Effects of Lithium Treatment on Motor Neuron Survival (Lamina IX of
Lumbar and Cervical Spinal Cord and Brainstem Motor Nuclei). These
effects were accompanied by a reduced loss of lumbar MN at 90
days of age (SI Fig. 7). However, at the end of disease (which
occurred later following lithium), the number of alpha-MN
within lumbar lamina IX of the G93A mice treated with lithium
was comparable to that found in the saline-treated mice that had
died previously (SI Fig. 8). However, even at this stage, we
detected a disease modifying effect of lithium. This consisted of
(i) preservation of the size of MN (SI Fig. 8 d and e); (ii)
preservation of MN number and size in those areas [i.e., cervical
spinal cord (SI Fig. 9) or the nucleus ambiguous (SI Fig. 10)],
which degenerate later compared with lumbar lamina IX (23,
24); (iii) decreased astrocytosis (SI Fig. 11); and (iv) decreased
alpha-synuclein, ubiquitin, and SOD1 aggregation (see SI Fig. 6
and Discussion in SI Text).
Effects of Lithium Treatment on the Renshaw-Like Cell Area (Lamina
VII). Lamina VII contains a larger number of interneurons,
defined as Renshaw cells, which form a collateral circuit that
Author contributions: F.F., P. Longone, C.I., L.M., S.R., and A.P. designed research; O.K.,
M.F., M.L.M., G.L., A.S., N.B., P. Lenzi, N.M., and G.S. performed research; L.C., M.F., M.L.M.,
G.L., P. Lenzi, G.S., C.I., L.M., S.R., and A.P. analyzed data; and F.F. and P. Longone wrote the
paper.
The authors declare no conflict of interest.
This article is a PNAS Direct Submission.
Freely available online through the PNAS open access option.
‡To whom correspondence should be addressed. E-mail: f.fornai@med.unipi.it.
This article contains supporting information online at www.pnas.org/cgi/content/full/
0708022105/DC1.
© 2008 by The National Academy of Sciences of the USA
2052–2057 ͉ PNAS ͉ February 12, 2008 ͉ vol. 105 ͉ no. 6 www.pnas.org͞cgi͞doi͞10.1073͞pnas.0708022105
NATURE BIOTECHNOLOGY VOLUME 29 NUMBER 5 MAY 2011 411
A N A LY S I S
Patients with serious diseases may experiment with drugs
that have not received regulatory approval. Online patient
communities structured around quantitative outcome data
have the potential to provide an observational environment
to monitor such drug usage and its consequences. Here
we describe an analysis of data reported on the website
PatientsLikeMe by patients with amyotrophic lateral sclerosis
(ALS) who experimented with lithium carbonate treatment.
To reduce potential bias owing to lack of randomization, we
developed an algorithm to match 149 treated patients to
multiple controls (447 total) based on the progression of their
disease course. At 12 months after treatment, we found no
effect of lithium on disease progression. Although observational
studies using unblinded data are not a substitute for double-
blind randomized control trials, this study reached the same
conclusion as subsequent randomized trials, suggesting that
data reported by patients over the internet may be useful for
accelerating clinical discovery and evaluating the effectiveness
of drugs already in use.
Online communities such as PatientsLikeMe that provide robust
methods for patients to record and share data may have the potential
to be used to conduct observational studies to assess the effectiveness
of treatments. Although observational studies inherently cannot meet
the gold standard of randomized clinical trials, they provide an oppor-
tunity to collect possibly useful early-phase data by capturing patients’
self-experimentation. Empowering observational studies of patients’
self-experimentation carries some risks. Nevertheless, an increasing
level of self-experimentation is already happening1. In this context,
it is possible that patient-reported outcome data collected over the
Internet could be integrated into academic and/or industry-led cycles
of product development and evaluation2.
Approximately half of ALS patients take vitamins and unproven
supplements3, whereas a smaller number go to extraordinary lengths
to experiment with unproven treatments such as stem cell transplants
in the developing world4. Recently, a consortium of 75 ALS physi-
cians, scientists and experts (ALSUntangled.com) has been formed
to investigate the use of self-experimentation, complementary and
alternative medicine, and off-label drug usage5. There are a number
of benefits to systematically studying patients’ self-experimentation.
First, it is important to respect patients’ autonomy and their deci-
sions; helping them participate in systematic evaluations may increase
scientific literacy. Second, there is an obligation to collect data on
the safety of self-experimentation. Unproven treatments might have
substantial safety concerns, and risks to patients may be increased
without a way to report safety issues. Finally, there is the chance that
something (i.e., off-label usage, a change in dosage, delivery route or
combination with other treatments) might actually be shown to be
efficacious, leading to further study.
ALS is a condition where both randomized trials and nonrand-
omized clinical studies have yet to provide an effective therapy. It is
a cruel and rapidly fatal neurodegenerative disease causing progres-
sive weakness and muscle atrophy; median survival from symptom
onset is 2–5 years6. In 2008, a study described the potential efficacy
of lithium carbonate to slow the progression of ALS in a small, single-
blind trial of 16 treated patients and 28 controls7. Despite skepticism
from the medical community8–10, some ALS patients were enthusi-
astic about the treatment11 and by their own initiative used an online
spreadsheet to gather data. PatientsLikeMe built a lithium-specific
data collection tool (see Supplementary Fig. 1) to capture informa-
tion about the 348 ALS patients registered with the PatientsLikeMe
website who began taking the drug off-label via their physician. To
investigate whether the major effect of lithium carbonate reported in
the original study was corroborated in these 348 patients, we under-
took an observational analysis of self-reported outcomes. ALS disease
progression is evaluated using the Revised ALS Functional Rating
Scale (ALSFRS-R12, henceforth referred to as FRS), which measures
patient-reported functional impairment in domains such as speech,
swallowing, walking, arm function and respiratory function. This
metric is one of the standard outcome measures used in ALS clinical
trials. In the absence of randomization, blinding or a placebo group,
a technique was needed to overcome potential biases, such as the
inherent self-selection of self-experimentation in an online sample,
the placebo effect and attrition.
RESULTS
Participants
As of the date that our data set was finalized (28 February 2010), there
were 4,318 ALS patients on PatientsLikeMe, all of whom were invited
Accelerated clinical discovery using self-reported
patient data collected online and a patient-matching
algorithm
Paul Wicks, Timothy E Vaughan, Michael P Massagli & James Heywood
Research and Development, PatientsLikeMe Inc., Cambridge, Massachusetts,
USA. Correspondence should be addressed to P.W. (pwicks@patientslikeme.com).
Received 2 April 2010; accepted 10 March 2011; published online 24 April 2011;
doi:10.1038/nbt.1837
©2011NatureAmerica,Inc.Allrightsreserved.

38. Disruptive Innovation in Health Care
Worksite
Clinics
Wellness Programs
Telehealth
/ e-Visits
Hospital
at Home
Automated
Kiosk
Services While
Traveling Abroad
Medical Homes
and Care Teams
Home Visits
Retail
Clinics
Home
Monitoring
Wireless
Health
Devices
Mobile Care
Services
Telecommunications
Precision
Diagnostics
Information Management
and Decision-making Tools
Based on Jason Hwang’s Work

39. Worksite
Clinics
Wellness Programs
Telehealth
/ e-Visits
Hospital
at Home
Automated
Kiosk
Services While
Traveling Abroad
Medical Homes
and Care Teams
Home Visits
Retail
Clinics
Home
Monitoring
Wireless
Health
Devices
Mobile Care
Services
Telecommunications
Precision
Diagnostics
Information Management
and Decision-making Tools
Where Do Nurses Fit In?
Based on Jason Hwang’s Work
Care Coordination
Health Information Exchange

40. CONSUMER HEALTH INFORMATICS & COMMUNICATION LABORATORY
謝謝

41. CONSUMER HEALTH INFORMATICS & COMMUNICATION LABORATORY