the beginnings of an open ecosystem in mhealth

brian m. bot | principal scientist |

the beginnings of an open ecosystem in

2015 sep 30

sage bionetworks

mHealth

the new york academy of sciences

mHealth

move beyond insular health tracking

how to balance desire to share w/ importance of privacy?

sage bionetworks

a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons

focused on a world where biomedical researchwill fundamentally change to be more open and collaborative

supports communities of researchers working collaboratively across disciplines

our approach

a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons

focused on a world where biomedical researchwill fundamentally change to be more open and collaborative

supports communities of researchers working collaboratively across disciplines

sage bionetworks

our approach

Wisdom'of'the'crowd'

Ci0zen'engagement'Data'sharing'

Open'Collabora0ve'Research'

Gamifica0on'

Community'Development'

Consor0a'/'Federa0on'

sage bionetworks

the beginnings of an open ecosystem in mHealth

moving beyond the appparticipantcenteredconsent

open source toolkitparticipant-centered consent

http://sagebase.org/pcc

http://sagebase.org/pcc

1. tiered information access by participants

2. ‘pictorial’ dominant on first information tier

3. text dominant on second information tier

4. require perfect score on short assessment

participant-centered consent

radical honesty > radical restrictions

changeable by participant

> 70% choose to “share broadly”

~75k participants across all studies

balance the security settings of the system with the desires of those being studied

security as ‘prevent access as much as possible’ isn’t the answer

give researchers the tools to do the right thing

open RESTful APIs

www.synapse.org

programmatic clients

access rights for controlled sharing

analyses tracked with versioning and provenance

publication and sharing for reproducibility

a research commons enabling secondary research

access rights for controlled sharing

code in github

data in synapse

results in synapse

analyses tracked with versioning and provenance

publication and sharing for reproducibility

promote an ecosystem where

for others to consumeis conducted research

research

38

mPower

39

• 59,700 downloads from app store

• 16,585 participants consented (28% of total downloaded)

• 15,185 participants enrolled (92% of all consented)

• 78% of participants chose to share data broadly

• 17% of participants who completed enrollment survey indicate a diagnosis of Parkinson disease (1501/8715)

mPower

Passive Measures

GPS - Displacement

Vectors

GPS - Displacement

Vectors- -

Structured Activities

Tapping Activity

Walking/Standing Activity

Voice Activity Memory Game

Surveys MDS-UPDRS PDQ8

MDS-UPDRS PDQ8

MDS-UPDRS PDQ8

MDS-UPDRS PDQ8

four symptoms of PD

Motor Initiation Gait/Balance Hypophonia Memory

Motor Initiation Gait/Balance Hypophonia Memory

Standard

Structured Activities

Passive Measures

• High Friction (long, infrequent)• Validated in large cohorts• Basis for most publications

• Mild Friction (more frequent)• Minimal validation

• Minimal Friction• Not validated

mPower

43

Traditional Measures First-order Features

Number of Taps

Number of taps, Mean tapping interval, Median tapping interval, Minimum tapping interval, maximum tapping interval, Standard

deviation of tapping interval, Kurtosis of tapping interval, Interquartile range of tapping interval, Interquartile range of right button X, Range right button X ,Standard deviation right button X, Interquartile range of left button X, Range left button X ,Standard deviation left button X, Interquartile range of right button Y, Range

right button Y ,Standard deviatiion right button Y, Interquartile range of left button Y, Range left button Y ,Standard deviation left button Y, Correlation X and Y, Skew tapping interval, No-button tapping frequency, Fatigue at 10%, Fatigue at 25%, Fatigue at

50%, Mean drift left, Mean drift right, min Drift left, min Drift right, Max drift left, Max drift right, IQR drift left, IQR drift right, skew drift

left, Skew drift right, Kurtosis drift left, Kurtosis drift right, Range drift left, Range drift right, CV drift left, CV drift right

traditional vs. digital measures

62 year old man2009 onset of symptoms 2009 start meds mean change: 51 taps max change: 111 taps min change: -21 taps

67 year old woman2004 onset of symptoms 2009 start meds mean change: -4 taps max change: 28 taps min change: -38 taps

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before/after medication classif.

AUC

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nced

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kurTappingInterbuttonNoneFreq

medianTappingInterminTappingIntermaxTappingInter

skewTappingInterrangeLeftY

madTappingIntermeanTappingInter

rangeLeftXsdLeftX

iqrTappingInternumberTaps

sdRightXiqrLeftYsdLeftY

iqrRightXrangeRightX

iqrLeftXsdTappingInter

iqrRightYcorXY

rangeRightYsdRightY

0 1 2 3 4

tapping features only

Importance

Mar 16 Mar 26 Apr 05 Apr 15 Apr 25

510

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6899ba07−f868−49db−9651−3504b6d754d6

date

sdR

ight

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6899ba07−f868−49db−9651−3504b6d754d6

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original shuffled

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AUC

original shuffled

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bala

nced

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iqrLeftYrangeLeftX

sdLeftXskewTappingInter

iqrLeftXsdLeftY

buttonNoneFreqiqrRightYsdRightY

rangeRightXcorXY

rangeRightYsdRightX

rangeLeftYiqrRightX

madTappingInteriqrTappingInterkurTappingIntersdTappingInter

maxTappingInterminTappingInter

medianTappingIntermeanTappingInter

numberTaps

0 2 4 6 8


Importance


4060

8010

012

014

016

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bda58cbf−a773−487d−bbc4−2fe367e0fcc2

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24

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62 year old manNumber of Taps Mean Tapping Interval Median Tapping Interval

67 year old womanStandard Deviation R Y Range Right Y Correlation X Y

same medicine, different impacts

1 − original − numberTaps − 6c130d05−41af−49e9−9212−aaae738d3ec1

don'totherafter

before

Mar 9 Apr 1 May 1 Jun 1 Jul 1 Aug 1 Sep 1

1 − detrended − numberTaps − 6c130d05−41af−49e9−9212−aaae738d3ec1

don'totherafter

before


2 − original − numberTaps − cdb18d7b−6793−48c0−8085−63c2a71ce5a9

don'totherafter

before


2 − detrended − numberTaps − cdb18d7b−6793−48c0−8085−63c2a71ce5a9

don'totherafter

before


3 − original − numberTaps − bda58cbf−a773−487d−bbc4−2fe367e0fcc2

don'totherafter

before


3 − detrended − numberTaps − bda58cbf−a773−487d−bbc4−2fe367e0fcc2

don'totherafter

before


14 − original − numberTaps − 1ff805eb−4e96−4d64−b7a4−cc54aaddf2d6

don'totherafter

before


14 − detrended − numberTaps − 1ff805eb−4e96−4d64−b7a4−cc54aaddf2d6

don'totherafter

before


16 − original − numberTaps − 8beab5c6−6067−4c47−b655−1901f5a534a8

don'totherafter

before


16 − detrended − numberTaps − 8beab5c6−6067−4c47−b655−1901f5a534a8

don'totherafter

before


25 − original − numberTaps − 487959bf−bab4−488a−a9ae−67b4e645f347

don'totherafter

before


25 − detrended − numberTaps − 487959bf−bab4−488a−a9ae−67b4e645f347

don'totherafter

before


30 − original − numberTaps − 5c525b29−bf01−47ea−ba44−4261a8325b7b

don'totherafter

before


30 − detrended − numberTaps − 5c525b29−bf01−47ea−ba44−4261a8325b7b

don'totherafter

before


31 − original − numberTaps − 8ef4e9c3−c701−47e4−bec5−4ca64dbdadc7

don'totherafter

before


31 − detrended − numberTaps − 8ef4e9c3−c701−47e4−bec5−4ca64dbdadc7

don'totherafter

before


54 − original − numberTaps − 61e223ac−4657−48b8−89b0−d37df5c85d39

don'totherafter

before


54 − detrended − numberTaps − 61e223ac−4657−48b8−89b0−d37df5c85d39

don'totherafter

before


66 − original − numberTaps − ac7c3961−9268−42b7−aeb7−fc4c49c7a6bb

don'totherafter

before


66 − detrended − numberTaps − ac7c3961−9268−42b7−aeb7−fc4c49c7a6bb

don'totherafter

before


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Apr May Jun Jul Aug Sep

100

150

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250 61 − 831f3fe8−8e67−420a−a419−1415168f1cc3

numberTaps

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50100

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62 − c6d662c2−5af8−4781−bb68−d99162d9d1fa

numberTaps

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160

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63 − 43294479−32e0−4589−92ee−269b36a70e46numberTaps

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6080

100

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180 64 − 72f75a4d−de63−4077−b77e−49d98f559e8c

numberTaps

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100

150

200

250

300

350

400 65 − 65883b0e−ec25−4883−9019−ae20a495b072

numberTaps

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4060

80100

120

140

160

66 − ac7c3961−9268−42b7−aeb7−fc4c49c7a6bb

numberTaps

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80100

120

140

67 − b2a760b7−bd2d−4918−a7b7−6fa385423e11

numberTaps

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50100

150

200

250 68 − b4bb8c67−33ac−4333−b1aa−6b79babc40fc

numberTaps

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21 − original − audio.Median_F0 − d0ae0ee1−165b−4e5a−9caa−ad8a17688445

don'totherafter

before


21 − detrended − audio.Median_F0 − d0ae0ee1−165b−4e5a−9caa−ad8a17688445

don'totherafter

before


22 − original − audio.Median_F0 − 72f75a4d−de63−4077−b77e−49d98f559e8c

don'totherafter

before


22 − detrended − audio.Median_F0 − 72f75a4d−de63−4077−b77e−49d98f559e8c

don'totherafter

before


23 − original − audio.Median_F0 − 9884c3bf−86bb−4370−acbf−19db34cf297c

don'totherafter

before


23 − detrended − audio.Median_F0 − 9884c3bf−86bb−4370−acbf−19db34cf297c

don'totherafter

before


24 − original − audio.Median_F0 − 1ff805eb−4e96−4d64−b7a4−cc54aaddf2d6

don'totherafter

before


24 − detrended − audio.Median_F0 − 1ff805eb−4e96−4d64−b7a4−cc54aaddf2d6

don'totherafter

before


25 − original − audio.Median_F0 − 7457113a−34bd−4324−935c−f66bd33f1e4b

don'totherafter

before


25 − detrended − audio.Median_F0 − 7457113a−34bd−4324−935c−f66bd33f1e4b

don'totherafter

before


26 − original − audio.Median_F0 − ac7c3961−9268−42b7−aeb7−fc4c49c7a6bb

don'totherafter

before


26 − detrended − audio.Median_F0 − ac7c3961−9268−42b7−aeb7−fc4c49c7a6bb

don'totherafter

before


27 − original − audio.Median_F0 − 65883b0e−ec25−4883−9019−ae20a495b072

don'totherafter

before


27 − detrended − audio.Median_F0 − 65883b0e−ec25−4883−9019−ae20a495b072

don'totherafter

before


28 − original − audio.Median_F0 − a50dfd03−6211−47ff−9d94−8026c65eed93

don'totherafter

before


28 − detrended − audio.Median_F0 − a50dfd03−6211−47ff−9d94−8026c65eed93

don'totherafter

before


29 − original − audio.Median_F0 − f8d44faa−f71a−43be−9fa8−8d381b9cc380

don'totherafter

before


29 − detrended − audio.Median_F0 − f8d44faa−f71a−43be−9fa8−8d381b9cc380

don'totherafter

before


30 − original − audio.Median_F0 − 9cf05509−f169−4b4b−8ef5−3124213f3d8e

don'totherafter

before


30 − detrended − audio.Median_F0 − 9cf05509−f169−4b4b−8ef5−3124213f3d8e

don'totherafter

before


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8090

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140

21 − audio.Median_F0 − d0ae0ee1−165b−4e5a−9caa−ad8a17688445

audio.Median_F0

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160

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22 − audio.Median_F0 − 72f75a4d−de63−4077−b77e−49d98f559e8c

audio.Median_F0

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6080

100

120

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23 − audio.Median_F0 − 9884c3bf−86bb−4370−acbf−19db34cf297c

audio.Median_F0

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150

200

250

24 − audio.Median_F0 − 1ff805eb−4e96−4d64−b7a4−cc54aaddf2d6

audio.Median_F0

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120

140

160

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25 − audio.Median_F0 − 7457113a−34bd−4324−935c−f66bd33f1e4b

audio.Median_F0

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160

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260 26 − audio.Median_F0 − ac7c3961−9268−42b7−aeb7−fc4c49c7a6bb

audio.Median_F0

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180

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27 − audio.Median_F0 − 65883b0e−ec25−4883−9019−ae20a495b072

audio.Median_F0 ●

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100

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250 28 − audio.Median_F0 − a50dfd03−6211−47ff−9d94−8026c65eed93

audio.Median_F0

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100

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29 − audio.Median_F0 − f8d44faa−f71a−43be−9fa8−8d381b9cc380

audio.Median_F0

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105

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30 − audio.Median_F0 − 9cf05509−f169−4b4b−8ef5−3124213f3d8e

audio.Median_F0

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scorecard of sensor-based phenotypes for clinical tracking

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original shuffled

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1.0


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original shuffled

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1.0


bala

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iqrLeftYrangeLeftX

sdLeftXskewTappingInter

iqrLeftXsdLeftY

buttonNoneFreqiqrRightYsdRightY

rangeRightXcorXY

rangeRightYsdRightX

rangeLeftYiqrRightX

madTappingInteriqrTappingInterkurTappingIntersdTappingInter

maxTappingInterminTappingInter

medianTappingIntermeanTappingInter

numberTaps0 2 4 6 8


Importance


4060

8010

012

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0


date

num

berT

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beforeafterother

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0.15

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0.45


date

mea

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0.00

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date

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date

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impact care by empowering a dialogue between patient and physician

brian m. bot———————— principal scientist community manager sage bionetworks [email protected] @BrianMBot

thank you

mailto:[email protected]

the beginnings of an open ecosystem in mhealth

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