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.

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

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

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.

Patient Portals in the News

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

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

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

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

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.

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

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

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

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

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

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

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

Diagnosis Treatment Common Side Effects of Treatment Symptoms Diagnostic tests Davidson et al. 1999. x Jenkins et al. 2001. Gore et al. 2000. Leydon et al. 2000. Murray et al. 2002 Slaughter et al. 2005 Butow et al. 1997. Clauser et al. 2011. Grant et al. 2006. Hess et al. 2006 Koch-Weser et al. 2010. Bass et al. 2006. Sarkar et al. 2010. 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

Literature Review Diagnosis Treatment Common Side Effects of Treatment Symptoms Diagnostic tests Davidson et al. 1999. x Jenkins et al. 2001. Gore et al. 2000. Leydon et al. 2000. Murray et al. 2002 Slaughter et al. 2005 Butow et al. 1997. Clauser et al. 2011. Grant et al. 2006. Hess et al. 2006 Koch-Weser et al. 2010. Bass et al. 2006. Sarkar et al. 2010. Looked specifically for peer reviewed articles on the subject of patient information needs and preferences (not visualization, not security, etc)

Survey 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 It is difficult for me to find health information

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

Abstracted Practitioner Guidelines Practitioner guidelines as

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

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

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

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.

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

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 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

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

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

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)

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

Filter Out Irrelevant Sources

Combine Sources

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

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.

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?

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?