Mary McNamara

UCLA Dept. BioEngineering

05/03/13

Acknowledgements

This work was supported by NIH/NCI R01 LM011333 and NIH/NLM T15 LM07536.

Patient Portal and Their Potential to Supply Personalized Guidelines

2000 20100

0.10.20.30.40.50.60.70.8

Percent On-linePercent HealthInfo

• 2000

• 46% online access

• 25% looked for health information

• 2010

• 74% online access

• 61% looked for health information

Patient Information Seeking

Health Record Information Practitioner

Guidelines

Online Forums Consumer Health Sources

Information Sources Consulted by Patients

• Ability to read and apply health information to an individual’s health

• Professional terminology versus patient language

• Need to create an “interpretative layer”

Health Literacy

Patient Portals in the News

Personalized lists of appointment, medications and procedures

Patient Portal

Personal Health Records vs. Portals

Traditionally:

• Portals –tend to owned by institution, contain institutionally produced content.

• PHRs- do not belong to an institution, owned by the patient. Can include information from multiple institutions.

• However, these distinctions are beginning to disappear.

What are the symptoms of lung cancer? — Common symptoms of lung cancer can include:

CoughTrouble breathing, or wheezingSpitting or coughing up bloodChest pain that can be dull, sharp, or stabbingHoarse voiceHeadache and swelling of the face, arms, or neck

http://www.uptodate.com/contents/lung-cancer-the-basics?source=see_link

Patient Information Sources: Generalizable

Coughing up blood is one of the common respiratory tract symptoms. Respiratory tract bleeding is the direct cause for coughing up blood. However, behind the coughing up blood, usually a respiratory disease, or pulmonary blood circulation disease is present. Some diseases that lead to a coughing up blood, are harmless and can be completely cured, while some are life-threatening. The coughing up blood can occur in any population, and the incidence of coughing up blood is on the rise with the age for most people.

Patient Information Sources: Lack of Reconciliation

Historically, most patients with lung cancer presented with symptoms of the disease, including : cough, dyspnea, hemoptysis, pain, weight loss, and cachexia.

Practitioner Guidelines: High Level Language

The source of massive hemoptysis may be identified during the initial efforts to control the bleeding. If it is not, then a dedicated diagnostic evaluation is necessary. The timing of the diagnostic evaluation depends upon the course of the hemoptysis:If the hemoptysis is brisk despite initial measures to control the bleeding, then initial diagnostic efforts must begin in concert with ongoing efforts to stabilize the patient and control the bleeding.If the hemoptysis is intermittent or slowing following initial measures to control the bleeding, then the diagnostic evaluation begins after the patient has stabilized.

http://www.uptodate.com/contents/overview-of-massive-hemoptysis

Practitioner Guidelines: Varying Levels of Certainty

Health Record Information

Practitioner Guidelines

Conversations with Practitioners

Consumer Health Sources

Symptom: Coughing BloodWeight Loss

Symptom: Coughing BloodScreening:X-ray

Definition Coughing Blood

Determine Cause and Extent of Hemoptysis

Making Sense of the Information

Professional guidelines

Patient information needs and

preferencesMedical records

The diagnosis and interventions (i.e., what the patient has, and the course of treatment) relative to the standard of careScreening techniques,

prognosis, treatment options, quality of life concerns

Other patients’ experiences, alternative medicine

Clinical findings, codified diagnostic and procedural information

Billing information

Consumer Health Sources

Practitioner Guidelines

Health Record Information

Combine and Filter Sources

• Filter

• Use data model to determine relevant content

• Normalize terminology

• Definition

• Translation

• Simplify data presentation

• Use of visual metaphors

• Update

• Reduce redundancy

• Combine repetitive content

Combine and Filter Sources

• Introduce

• Define and explain

• Link

• Provide further details

Visual Metaphors

• Literature Review

• Conducted Survey on Patient Preferences

• Abstracted Professional Guidelines and Consumer Content

• Designed Model

• Reviewed 50 Patient Records

• Revised Model

Methods

Diagnosis

Treatment

Common Side Effects of Treatment

Symptoms

Diagnostic tests

Davidson et al. 1999.

x x x

Jenkins et al. 2001. x x x

Gore et al. 2000. x x xLeydon et al. 2000. x x x

Murray et al. 2002

Slaughter et al. 2005

x

Butow et al. 1997. x x

Clauser et al. 2011. x x x x

Grant et al. 2006. x x xHess et al. 2006 x xKoch-Weser et al. 2010.

x

Bass et al. 2006. x xSarkar et al. 2010. x

Class Number of Sources Citing information need

Guideline Concepts mapped to Class

Diagnosis 7 Tx, T0, Tis, T1, T2, T3, T4Symptoms 4 Weight Loss, Fatigue,

Chest Pain, Lung Infection, Breathing Trouble, Cough, Hoarse Voice

Diagnostic tests 3 Sputum Test, Bronchoscopy, Thoracentesis, LDH, PET Scan, Albumin, Chest X-ray, Computed Tomography , Video Assisted Thoracoscopy, Pulmonary Function Test, MRI, Thoracotomy, Fine Needle Aspiration, Mediastinoscopy, Blood Test, Bone Scan

Symptoms Tumor Mass Smoking Status

Diagnostic Test

Diagnostic Test continued

Weight Loss Tx Mass Present

(Yes/No)

Smoker

(Yes/No)

Thoracentesis Thoracotomy

Fatigue T0 Mass Location Pack Year Bronchoscopy Fine Needle

AspirationChest Pain Tis Mass Size LDH Mediastinoscop

yLung Infection T1 Sputum Test Blood Test

Breathing

Trouble

T2 PET Scan Bone Scan

Coughing Blood

T3 Albumin

Hoarse Voice T4 Chest X-ray

Computed

Tomography Video Assisted

Thoracoscopy

Pulmonary

Function Test

MRI

Diagnosis Treatment Common Side Effects of Treatment Symptoms Diagnostic tests

Davidson et al. 1999. x x x

Jenkins et al. 2001. x x x

Gore et al. 2000. x x x

Leydon et al. 2000. x x x

Murray et al. 2002

Slaughter et al. 2005 x

Butow et al. 1997. x x

Clauser et al. 2011. x x x x

Grant et al. 2006. x x x

Hess et al. 2006 x x

Koch-Weser et al. 2010. x

Bass et al. 2006. x x

Sarkar et al. 2010. x

Literature Review

•41 Participants

• Patients from lung cancer clinic at UCLA

•Paper survey, 15 questions

•Likert scale

•Multiple choice

•Short answer

Survey

Where do you get your health information?

Survey

Consumer Health Practitioner Sources Search Engine0

10

20

30

40

50

60

70

58.8

14.6

58.8

It is difficult for me to find health information

Survey

7.3

22

36.6

31.7

2.4

Strong DisagreeDisagreeNeutral AgreeNo Answer

How would you like to see your personal medical record?

Survey

Internet Paper CD USB 0

10

20

30

40

50

60

70

8070.7

58.5

29.3

12.2

Abstracted Practitioner Guidelines

Class Number of Sources Citing information need

Guideline Concepts mapped to Class

Diagnosis 7 Tx, T0, Tis, T1, T2, T3, T4

Symptoms 4 Weight Loss, Fatigue, Chest Pain, Lung Infection, Breathing Trouble, Cough, Hoarse Voice

Diagnostic tests 3 Sputum Test, Bronchoscopy, Thoracentesis, LDH, PET Scan, Albumin, Chest X-ray, Computed Tomography , Video Assisted Thoracoscopy, Pulmonary Function Test, MRI, Thoracotomy, Fine Needle Aspiration, Mediastinoscopy, Blood Test, Bone Scan

Designed Initial Model

Symptoms Tumor Mass Smoking Status Diagnostic Test Diagnostic Test continued

Weight Loss Tx Mass Present

(Yes/No)

Smoker

(Yes/No)

Thoracentesis Thoracotomy

Fatigue T0 Mass Location Pack Year Bronchoscopy Fine Needle

AspirationChest Pain Tis Mass Size LDH MediastinoscopyLung Infection T1 Sputum Test Blood Test Breathing

Trouble

T2 PET Scan Bone Scan

Coughing Blood T3 Albumin

Hoarse Voice T4 Chest X-ray

Computed

Tomography Video Assisted

Thoracoscopy Pulmonary

Function Test MRI

Revised Model

Health Concepts

Tumor

Mass xSymptom

xSmoking Status x

Procedure x

Definition

Likely Action

Location

Size Size

Location

Definition

Likely Action

Tumor x

Mass SymptomSmoking Status

Procedure

Temporal Data

Temporal Data

Temporal Data

Definition

Likely Action

Yes

No

PriorCurrent

Definition

DefinitionPack Year

Pack Year

Definition

Temporal Data

What to Expect

When to Use

Information Model with Attributes

Consumer Health Source Practitioner Guideline Source Report Content

ConceptCoughing Up Blood

Definition Consumer Informatio

n

Treatment Practitione

r Informatio

n

MedlinePlusCoughing up blood can be caused by a variety of lung conditions. Coughing up blood can take different forms: The blood may be bright red or pink and frothy, or it may be mixed with mucus.

UpToDateIf the hemoptysis is brisk despite initial measures to control the bleeding, then initial diagnostic efforts must begin in concert with ongoing efforts to stabilize the patient and control the bleeding.

Model Concept Type : Symptom

ConceptBronchosco

py

Definition and What to ExpectConsumer Informatio

n

When to Use

TherapyPractitione

r Informatio

n

MedlinePlusA bronchoscopy is a special technique for looking inside the airways. During a bronchoscopy, the doctor uses a bronchoscope, a long thing flexible fiber optic tube that transmits video and can also take tissue samples.

UpToDateWe perform bronchoscopy early in a patient’s course. Practically speaking, we aim to perform bronchoscopy within the first 12 to 18 hours if the patient is clinically stable and their bleeding has become quiescent.

MedlinePlus The scope is passed through your mouth or nose, through your windpipe (trachea), and then into your lungs. Going through the nose is a good way to look at the upper airways. The mouth method allows the doctor to use a larger bronchoscope.

Model Concept Type : Procedure

Franz Kafka 998789

Symptoms

Cough

Fatigue

Smoking Status

Former Smoker

Procedures for Lung Screening

Sputum Test

X-Ray

Welcome Franz

Click on an item on the timeline to see when a concept occurs in your record

Click on any words in blue font on the left to learn more about a concept and to see individual reports where the concept is mentioned.

Click on the link all reports to see a list of all your medical reports.

Smoking

Symptom Procedure

All Reports

Filter by:

X-RayCough, Fatigue

CoughFormer Smoker

9/30/12 10/17/12 20/20/12

X-Ray, Sputum Test

List of concepts extracted from reports

Timeline displays variables occurrence longitudinally

Franz Kafka 998789

Symptoms

Cough

Fatigue

Smoking Status

Former Smoker

Procedures for Lung Screening

Sputum Test

X-Ray

Welcome Franz

Click on an item on the timeline to see when a concept occurs in your record

Click on any words in blue font on the left to learn more about a concept and to see individual reports where the concept is mentioned.

Click on the link all reports to see a list of all your medical reports.

Smoking

Symptom Procedure

All Reports

Filter by:

Cough, Fatigue

Cough

9/30/12 10/17/12 20/20/12

Timeline data can be filtered by class

Franz Kafka 998789

You had your last X-ray on 10/17/12.

See a basic definition for the concept X-ray

See how practitioners use x-rays in lung cancer screening

Learn about the process of getting a chest x-ray

Return to concept list for lung screening

See all reports

All reports containing the concept X-ray

10/17/12 Radiology Kafka, Franz

12/20/12 Oncology Kafka, Franz

Gathered from consumer health sources

Gathered from practitioner sources

Gathered from medical record

Franz Kafka 998789

You had your last X-ray on 10/17/12.

See a basic definition for the concept X-ray

See how practitioners use x-rays in lung cancer screening

Learn about the process of getting a chest x-ray

Return to concept list for lung screening

See all reports

All reports containing the concept X-ray

10/17/12 Radiology Kafka, Franz

12/20/12 Oncology Kafka, Franz

Franz Kafka 998789

You had your last X-ray on 10/17/12.

Definition for the concept X-rayChest X-rays produce images of your heart, lungs, blood vessels, ribs and the bones of your spine.

Chest X-rays can also reveal fluid in your lungs or in the spaces surrounding your lungs, enlargement of your heart, pneumonia, emphysema, cancer and many other conditions. Some people have a series of chest X-rays done over time, to track whether a particular health problem is getting better or worse.

See how practitioners use x-rays in lung cancer screening

Learn about the process of getting a chest x-ray

Return to concept list for lung screening

See all reports

All reports containing the concept X-ray

10/17/12 Radiology Kafka, Franz

12/20/12 Oncology Kafka, Franz

Filter Out Irrelevant Sources

Combine Sources

Franz Kafka 998789

You had your last X-ray on 10/17/12.

Definition for the concept X-rayChest X-rays produce images of your heart, lungs, blood vessels, ribs and the bones of your spine.

Chest X-rays can also reveal fluid in your lungs or in the spaces surrounding your lungs, enlargement of your heart, pneumonia, emphysema, cancer and many other conditions. Some people have a series of chest X-rays done over time, to track whether a particular health problem is getting better or worse.

See how practitioners use x-rays in lung cancer screening

Learn about the process of getting a chest x-ray

Return to concept list for lung screening

See all reports

All reports containing the concept X-ray

10/17/12 Radiology Kafka, Franz

12/20/12 Oncology Kafka, Franz

Franz Kafka 998789

Radiology Report 10/17/12EXAM: X-Ray CHEST 2 VIEWS

The cardiomediastinal silhouette is unchanged. The previously noted left infrahilar mass and multiple parenchymal nodular lesions essentially unchanged. No interval acute airspace opacification, pleural effusion or clinically significant pneumothorax is noted.

A pneumothorax is a collapsed lung.

Only 41 patients surveyed

Supplying supporting information does not guarantee understanding

Model designed for lung cancer screening only

Yet to conduct usability testing

Limitations

I would like to see my radiology images (e.g., x-ray, MRI, CT).

How to best incorporate images?

Further Research: Imaging

Strongly Agree

Agree Neutral Disagree Strongly Disagree

0

10

20

30

40

50 46.3

24.419.5 22.5

7.3