Upload
mervyn-jack-burke
View
215
Download
0
Tags:
Embed Size (px)
Citation preview
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