A Companion for Prostate Cancer Survivors€¦ · Ne A Companion for Prostate Cancer urvivors Page 3 About To address the aforementioned challenges, a novel prostate cancer survivorship

A Companion for Prostate Cancer SurvivorsPrepared by: Dr. Andrew Feifer & Dr. Joseph Cafazzo

Page 2Ned: A Companion for Prostate Cancer Survivors

Introduction

Over 100,000 American men are diagnosed with prostate cancer (PCa) annually1.

The resultant prolonged survivorship phase associated with early diagnosis and successful treatment creates a pressing need for durable support mechanisms to help men with disease and treatment-specific physical and psychological challenge. In surgically or radiologically treated men, many side effects such as voiding dysfunction and erectile dysfunction occur, along with psychological issues such as anxiety, fear, and isolation2.

Definitions of cancer survivorship have changed with the understanding that patient experience encompasses more than the medical treatment, but also involves the interplay of physical, psychosocial, and economic factors. Little information exists to guide the development of interventions

and methods of combining different survivorship features into a cohesive strategy, particularly in prostate cancer. Consequently, providers may not optimally deliver care due to program fragmentation, poor outreach, and poor patient self-management options.

Systematic reviews demonstrate that patient self-management solutions for chronic diseases such as congestive heart failure improve health outcomes3,4. When combined with appropriate care models, these solutions enable patients to track symptoms, receive automated instruction and clinical intervention during “teachable moments” in a cost-effective and scalable manner5. Automated real-time alerts also support timely intervention and clinical decisions by healthcare providers. On a broad level, there has not yet been a successful initiative in North America to link the collection of patient-reported outcomes (PROs) with objective clinical measures in prostate cancer patients. Additionally, the adoption of health outcome tools among providers remains low.

The siloed nature of data collection of patient-reported outcomes has prevented the use for operational management in the health system. In fact, the health industry has traditionally generated large amounts of complex data stored in a contextual vacuum. A decade of digitization of medical records and research has paved the way for an era of open data liquidity. This trend has been accelerated by government investments, which have begun to make stored data usable, searchable, and actionable. Addressing questions related to population health, enterprise strategy and operations, without the need for manual data mining, is pivotal. Nevertheless, integrating and presenting isolated data into meaningful decision support tools in real-time are necessary to achieve this goal.


About

To address the aforementioned challenges, a novel prostate cancer survivorship application has been developed.

This platform Ned, which stands for “No Evidence of Disease” (see Appendix A), uniquely links providers and patients. Ned is a seamless solution that gives patients and their oncologists a means to prospectively collect PROs via validated Health Related Quality of Life Questionnaires (EPIC-26 and FACT-P). This data can be analyzed to prompt behavioral or treatment changes or to inform trends in health outcomes.

Ned is designed for patients at all therapeutic stages of prostate cancer survivorship: post-surgery; post-radiation therapy; active surveillance; metastatic.

The platform includes capabilities for viewing personal outcomes over time, and real-time graphical and info-graphical comparisons to similarly matched patients.

In addition, Ned promotes self-care by informing patients directly of their Prostate Specific Antigen (PSA) results and providing them with a personalized view of their own symptoms. It also supports clinical decision-making by providing physicians with PSA results in real-time. The application includes curated self-care news feeds, as well as educational and support group linkages.

Having already completed the user validation testing, Ned will undergo a multi-institutional phase-2 clinical validation trial in Toronto in 2016. The primary objective of the trial will be to evaluate the feasibility of the platform to prostate cancer self-management and patient care, and facilitate provider-based incorporation of Health Related Quality of Life tools into routine clinical practice.

In addition to the trial and as part of a go-to-market strategy, Ned will be deployed to multiple jurisdictions in Canada and the U.S.


Addressing the problem:A standards based approach to integrating data

The use of standards is a key component of the interoperability strategy. In order to facilitate the transfer of information between Ned and patients’ EHR, the FHIR (Fast Healthcare Interoperable Resources) protocol has been selected.

FHIR is an emerging standard which makes it easy to exchange data between mHealth applications and their back-end servers, between systems in an organization, and across organizational and geographic boundaries. Specifically, FHIR makes it easy for Ned to choose exactly what data it wants to fetch, and makes it available in a format that is easy to understand.

Developed by the healthcare standards organization Health Level 7 International (HL7), the specification is built around modeling health data in a way that is easy to use and understand. As health data can be exchanged in XML and JSON, it is accessible to the majority of developers.

In order to be effectively deployed and achieve a high rate of clinical adoption, Ned must be seamlessly integrated into the healthcare providers’ workflow in that they will be able to access Ned without requiring additional user credentials or leaving their primary EMR systems. In the future Ned will be enhanced to support

the SMART on FHIR access control specifications (see Appendix B). This will allow rapid deployment of the platform at any organization that has implemented the SMART on FHIR specifications. SMART on FHIR leverages the same FHIR specifications used in Ned, and combines them with the OAUTH2 protocol for access control and authorization. Through the Argonauts project currently underway, over 20 organizations are implementing and testing these specifications. As vendors build support into their products, Ned is well positioned to be seamlessly deployed to a wide customer base across the US.

As a next generation mHealth platform, Ned accesses additional electronic health record (EHR) data in order to be a more robust personalized health tool.


The opportunity

Furthermore, by seamlessly integrating PROs into daily practice and thereby enhancing opportunity to capture prostate cancer patient outcomes, the physician-patient interaction is heightened, and survivorship for all patients is enhanced.

Ned is groundbreaking in that it is the first application in most jurisdictions to provide patients with access to contextualized, individual-level PSA data streamed from the lab directly to the mobile application. We have also developed a unique process through which PSA data can be shared with physicians via the application. The strength of the initiative is based on the

fact that it does not take the place of an informative discussion between patient and provider, nor does it complicate the follow up. It does however take into account that in reality, patient-provider interactions may be brief and that patients need an enhanced strategy to reinforce their communication, which as a result, leads to more meaningful interaction, and improved shared decision-making.

In summary, Ned’s data collection capabilities, standards based integration mechanisms, and innovative user decision support interface could serve as an avenue for improvements in clinical workflow and population health management.

By enabling patients to gain access to their own data, Ned is intended to support self-care, lessening the dependence on formal healthcare providers.

Ned could serve as a source of big data in prostate cancer care. Nevertheless, partnerships with analytics platforms are required to truly harness the value of Ned in turning raw data into strategic business information analytics and creating new insights for personalized healthcare.


References

1. SEER Stat Fact Sheets: Prostate Cancer. National Cancer Institute. Accessed on October 29, 2015 from: http://seer.cancer.gov/statfacts/html/prost.html.

2. Lozano, R., et al., Global and regional mortality from 235 causes of death for 20 agegroups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet, 2012. 380(9859): 2095-128.

3. Seto E. Cost Comparison between Telemonitoring and Usual Care of Heart Failure: A Systematic Review. Telemedicine and e-Health. 2008;14(7):679–86.

4. Wooden AK, Sherrard H, Fraser M, Stuewe L, Cheung T, Struthers C. Telehome Monitoring in Patients with Cardiac Disease Who Are at High Risk of Readmission. Heart & Lung. 2008;37(1):36–45.

5. Cafazzo JA, Seto E. The Hospital at Home: Advances in Remote Patient Monitoring. Biomedical instrumentation & technology / Association for the Advancement of Medical Instrumentation. 2010; Suppl Home Healthcare:47-52.

Appendix A

Appendix B

Clinician interface: HomeList of patients’ PSA alertsPSA Details: Patient’s latest PSA result PSA Details: Patient’s PSA values graphed over time

Patient interface:Home: View of Ned’s NotesHome: Welcome messaging & to-do items EventsCare TeamLatest PSA results and graphQuality of Life SurveyWellness SurveyReview of Wellness Survey responses

Ned on FHIR

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Page 8Ned: Appendix A

Clinician interface


Patient interface


Patient interface

Page 11Ned: Appendix B

HOSPITALS

OAUTH 2.0

PSA TESTS & CLINIC ADT

USER ACCOUNTS

SERVER

on FHIR

Thank you.Prepared by: Dr. Andrew Feifer & Dr. Joseph Cafazzo

A Companion for Prostate Cancer Survivors€¦ · Ne A Companion for Prostate Cancer urvivors Page 3 About To address the aforementioned challenges, a novel prostate cancer survivorship

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