Mary McNamara UCLA Dept. BioEngineering 05/03/13 Acknowledgements

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 LM011333 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 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”

5. Patient Portals in the News

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

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.

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

9. Patient Information Sources: Lack of Reconciliation Coughing up bloodis 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.

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.

11. Practitioner Guidelines: Varying Levels of Certainty The source of massive hemoptysismay 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 hemoptysisis 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 hemoptysisis 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

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

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

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

16. Visual Metaphors • Introduce • Define and explain • Link • Provide further details

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

19. Literature Review

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

25. Designed Initial Model

26. Revised Model

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 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. 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 998789 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 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 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 Gathered from medical record

33. 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

34. Franz Kafka 998789 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 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

40. Further Research: Imaging • I would like to see my radiology images (e.g., x-ray, MRI, CT). • How to best incorporate images?