1. Patient Portal and Their Potential to Supply Personalized Guidelines
Mary McNamara
UCLA Dept. BioEngineering
05/03/13
Acknowledgements
This work was supported by NIH/NCI R01 LM and NIH/NLM T15 LM07536.

2. Patient Information Seeking
2000
46% online access
25% looked for health information
2010
74% online access
61% looked for health information

3. Information Sources Consulted by Patients
Health Record Information
Practitioner Guidelines
Patients consult a variety of sources. Most patients have some conversation w their doctor regarding their health and diagnoses, some supplement this information with other sources including their personal health record, consumer health sources (medlinePlus mayo clinic),
Online Forums
Consumer Health Sources

4. Health Literacy
Ability to read and apply health information to an individual’s health
Professional terminology versus patient language
Need to create an “interpretative layer”
Consumers are looking for health information online, but how helpful is the information they find? Is it applicable to their health? Is it understandable? Health literacy is defined as
Professional terminology is standardized, patient language varies by education level, region, system of health beliefs
Need to create an interpretative layer that allows patients initial summaries of content that are understandable to a wide audience and simultaneously link that introductory content with more detailed information.

5. Patient Portals in the News

6. Patient Portal
Personalized lists of appointment, medications and procedures
Need to link

7. 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.
Need to link

8. Patient Information Sources: Generalizable
What are the symptoms of lung cancer? — Common symptoms of lung cancer can include:
Cough
Trouble breathing, or wheezing
Spitting or coughing up blood
Chest pain that can be dull, sharp, or stabbing
Hoarse voice
Headache and swelling of the face, arms, or neck
A patient who has a cough is being screened for lung cancer. He wants to know more. He looks up the symptoms of lung cancer.
Generalizable
Listed as 1 symptom

9. Patient Information Sources: Lack of Reconciliation
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.
He wants to know more about coughs, but he finds information that has nothing to do w screening. Although accurate, this content is not specific to his concerns.
But info on cough does not touch on lung cancer

10. Practitioner Guidelines: High Level Language
Historically, most patients with lung cancer presented with symptoms of the disease, including : cough, dyspnea, hemoptysis, pain, weight loss, and cachexia.
Practitioner content tries to cover all possibilities, and is thus expansive. Not all content will apply to the individual, sheer amount of information can be overwhelming to the patient.

11. Practitioner Guidelines: Varying Levels of Certainty
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.
Practitioner content is written with the intent of advising physicians what to do, tries to outline all possibilities and thus the language within contains varying levels of certain, which require expert knowledge in order to determine whether or not the information is applicable to the individual

12. Making Sense of the Information
Conversations with Practitioners
Health Record Information
Practitioner Guidelines
Consumer Health Sources
Symptom: Coughing Blood
Screening:
X-ray
Determine Cause and Extent of Hemoptysis
Definition Coughing Blood
Symptom: Coughing Blood
Weight Loss
Need more on content, go explicitly one by one

13. In order to do this pairing, we need concepts that overlap 3 areas

14. Combine and Filter Sources
Practitioner Guidelines
Consumer Health Sources
Health Record Information

15. Combine and Filter Sources
Use data model to determine relevant content
Normalize terminology
Definition
Translation
Simplify data presentation
Use of visual metaphors
Update
Reduce redundancy
Combine repetitive content

16. Visual Metaphors Introduce Define and explain Link
Provide further details
Introduce concepts, provide basic definitions and explanations, link these concepts to medical record content and paradigms used to understand health information. Provide in-depth details on request

17. Methods Literature Review Conducted Survey on Patient Preferences
Abstracted Professional Guidelines and Consumer Content
Designed Model
Reviewed 50 Patient Records
Revised Model

18. Diagnosis
Treatment
Common Side Effects of Treatment
Symptoms
Diagnostic tests
Davidson et al x
Jenkins et al
Gore et al
Leydon et al
Murray et al. 2002
Slaughter et al. 2005
Butow et al
Clauser et al
Grant et al
Hess et al. 2006
Koch-Weser et al
Bass et al
Sarkar et al
Symptoms
Tumor
Mass
Smoking Status
Diagnostic Test
Diagnostic Test continued
Weight Loss Tx
Mass Present
(Yes/No)
Smoker
Thoracentesis
Thoracotomy
Fatigue T0
Mass Location
Pack Year
Bronchoscopy
Fine Needle
Aspiration
Chest Pain
Tis
Mass Size
LDH
Mediastinoscop y
Lung 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
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
Lit review of articles from pubmed using terms ??? 13 articles, concept types that occurred 3+ times. Modeled professional guidelines, each possible ?? A node. Fit concept types into model nodes. Mined ??? Reports , created schema

19. Literature Review Diagnosis Treatment Common Side Effects of Treatment
Symptoms
Diagnostic tests
Davidson et al x
Jenkins et al
Gore et al
Leydon et al
Murray et al. 2002
Slaughter et al. 2005
Butow et al
Clauser et al
Grant et al
Hess et al. 2006
Koch-Weser et al
Bass et al
Sarkar et al
Looked specifically for peer reviewed articles on the subject of patient information needs and preferences (not visualization, not security, etc)

20. Survey 41 Participants Patients from lung cancer clinic at UCLA
Paper survey, 15 questions
Likert scale
Multiple choice
Short answer

21. Survey
Where do you get your health information?

22. Survey
It is difficult for me to find health information

23. Survey
How would you like to see your personal medical record?

24. Abstracted Practitioner Guidelines
Practitioner guidelines as

25. Designed Initial Model
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
Practitioner guidelines as

26. Revised Model Symptoms Tumor Mass Smoking Status Diagnostic Test
Diagnostic Test continued
Weight Loss Tx
Mass Present
(Yes/No)
Smoker
Thoracentesis
Thoracotomy
Fatigue T0
Mass Location
Pack Year
Bronchoscopy
Fine Needle
Aspiration
Chest Pain
Tis
Mass Size
LDH
Mediastinoscopy
Lung 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

27. Information Model with Attributes
Health Concepts
Tumor
Mass
Symptom
Smoking Status
Procedure
Tumor x
Mass x
Symptom x
Smoking Status x
Procedure x
Size
Size
Temporal Data No
Temporal Data
Location
Location
Definition
Yes
Definition
Current
Prior
Definition
Definition
Likely Action
What to Expect
Definition
Definition
Likely Action
Likely Action
When to Use
Pack Year
Pack Year
Temporal Data
Temporal Data
Consumer Health Source Practitioner Guideline Source Report Content

28. Model Concept Type : Symptom
MedlinePlus
Coughing 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.
Definition Consumer Information
Concept
Coughing Up Blood
In order to determine what types of attributes each concept class would have, as well as the best source for the attribute information, we diagramed the relationships we saw between concepts and the consumer and practitioner content provided on them. Consumer sources are good for supplying definitions or the what. Practitioner information tends to provide more of the how and why, such as why a concept is relevant to a person’s health or why a practitioner will use a certain procedure to treat a patient.
Treatment Practitioner Information
UpToDate
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.

29. Model Concept Type : Procedure
MedlinePlus
A 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.
Definition and What to Expect
Consumer Information
Concept
Bronchoscopy
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.
Procedure type relations
UpToDate
We 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.
When to Use Therapy
Practitioner Information

30. Franz Kafka
Timeline displays variables occurrence longitudinally
Symptoms
Cough
Fatigue
Smoking Status
Former Smoker
Procedures for Lung Screening
Sputum Test
X-Ray
List of concepts extracted from reports
Cough
X-Ray
Former Smoker
Cough, Fatigue
X-Ray, Sputum Test
9/30/12
10/17/12
20/20/12
Filter by:
Smoking
Symptom
Procedure
Initial interface, provides most important concepts in concept lists on side. Also organizes concepts by type on time line. Allows for filtering of types of concepts to see which are prevalent over time and how their prevalence changes.
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.
All Reports

31. Franz Kafka 998789 Symptoms Cough Fatigue
Smoking Status
Former Smoker
Procedures for Lung Screening
Sputum Test
X-Ray
Timeline data can be filtered by class
Cough, Fatigue
Cough
9/30/12
10/17/12
20/20/12
Filter by:
Smoking
Symptom
Procedure
Filtering by type of concept on timeline shows how type presence changes over time, here we see an increase in the number of symptoms
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.
All Reports

32. Franz Kafka 998789 Gathered from consumer health sources
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 practitioner sources
Click on a concept from the concept list to see the last time an occurrence was documented in the reports, all the times the concept is mentioned across reports (including references to past), definition for concept, as well as, depending on the type of concept, what to expect (procedure), what the likely next step is (symp, tumor, mass), why a procedure was used (proced)
Gathered from medical record

33. Franz Kafka 998789 All reports containing the concept X-ray
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
Click on a concept from the concept list to see the last time an occurrence was documented in the reports, all the times the concept is mentioned across reports (including references to past), definition for concept, as well as, depending on the type of concept, what to expect (procedure), what the likely next step is (symp, tumor, mass), why a procedure was used (proced)

34. Franz Kafka 998789 All reports containing the concept X-ray
You had your last X-ray on 10/17/12.
Definition for the concept X-ray
Chest 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

35. Filter Out Irrelevant Sources

36. Combine Sources

37. Franz Kafka 998789 All reports containing the concept X-ray
You had your last X-ray on 10/17/12.
Definition for the concept X-ray
Chest 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

38. Franz Kafka 998789 Radiology Report 10/17/12 EXAM: 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.

39. Limitations Only 41 patients surveyed
Supplying supporting information does not guarantee understanding
Model designed for lung cancer screening only
Yet to conduct usability testing
How best to incorporate images?
ROI slide
Entire series
How to reconcile uncertainty associated with professional guidelines?
Temporality of concepts. Concepts mentioned in multiple reports may only have occurred once (i.e., one x ray referred to across multiple reports).
How translatable is this schema across diagnoses?

40. Further Research: Imaging
I would like to see my radiology images (e.g., x-ray, MRI, CT).
How to best incorporate images?
How best to incorporate images?
ROI slide
Entire series
How to reconcile uncertainty associated with professional guidelines?
Temporality of concepts. Concepts mentioned in multiple reports may only have occurred once (i.e., one x ray referred to across multiple reports).
How translatable is this schema across diagnoses?