HIV

ePRO: impacting HIV clinical practice and outcomes

ePRO is a set of specific content and workflows built on the cPRO platform, and implemented in clinics around the country to enhance HIV clinical care. ePRO focusses on efficiently assessing clinically relevant information, and organizing that information for both patients and providers in the context of both their historical information and population data. ePRO improves attention to patient concerns, patient-provider communication, satisfaction with care, and detection and management of conditions and treatments. ePRO is implemented as usual care across the eight academic sites of the CNICS research network (cnics.org) as well as in a set of community clinics in the US and Canada as part of a ViiV funded project to enhance use of PROs in routine HIV clinical care (progresshivcare.org). Heidi Crane, MD, MPH (Professor, University of Washington School of Medicine) leads ePRO clinical implementation and research.

This HIV cPRO demo system is configured for a clinic workflow where staff used the system to generate a 4-digit numerical code, which they give to the patient to enter into the patient kiosk in order to launch their customized assessment.

Provider Demonstration Link

username: provider | password: provider

  1. After logging in, click "Survey Interface"
  2. Select the "UW CNICS PBM"
  3. Click "Patient Manager"
  4. Select a patient, and in the 'Ticket' column, click "Create"
  5. Use that 4-digit code in the patient kiosk website (below)
Patient Demonstration Link

username: patient | password: patient

Implementations

CNICS Fenway ViiV Midway (ViiV) OHTN (Viiv) OHTN "IMPROve" (ViiV)

Cancer

P3P Personal Prostate Profile

Clinical- and research-focused systems for treatment decision support, and during treatment. P3P (Personal Profile Prostate) was developed by Donna L. Berry, PhD, RN, AOCN, FAAN (Associate Professor, Department of Medicine, Harvard Medical School; Director, Phyllis F. Cantor Center for Research in Nursing & Patient Care Services, Dana-Farber Cancer Institute) to aid patients recently diagnosed with prostate cancer in their decision-making regarding treatment. The system delivers tailored educational content based on a self-assessment of the relative importance the patient places on current symptoms, physical and lifestyle outcomes, and the role social relationships play in decision making.

Demonstration Link


Survivor Wellness: Hodgkin's Disease

A Resource Program to learn general strategies for care of late and long-term effects of chemotherapy and/or radiation for the treatment of Hodgkin's Disease. Developed by Meghan Underhill at the Dana Farber Cancer Institute.


eSAC

The eSAC program is a patient-centered, web-based application that reduces cancer symptom distress. From Autumn 2020 to Spring 2022, eSAC will provide support to women with advanced ovarian cancer. The purpose of this new study is to promote palliative referrals when warranted, as well as improve genetics testing rates while also evaluating feasibility of clinical implementation. The project team at the University of Washington includes Dr. Donna Berry, Dr. Barbara Goff, Daniel Lorigan, Justin McReynolds, Dr. Seth Wolpin

Demonstration Link


ESRA-C

Electronic Self-Report Assessment for Cancer (ESRA-C) is a web-based program that patients can use to report health information to their care team. A recent study showed that using ESRA-C helps patients and their care team discuss symptoms and quality of life issues during clinic visits. A research version of ESRA-C is part of a study being done at the Dana-Farber Cancer Institute in Boston and the Seattle Cancer Care Alliance.


CIPN Chemotherapy-induced peripheral neuropathy

The long-term goal of this research is to decrease patient suffering by addressing the critical need for improved clinical systems to facilitate increased CIPN assessment and management in practice. Developed by Robert Knoerl at the Dana Farber Cancer Institute.


P3BC

This site allows you to build a profile by answering questions, then view personalized information about bladder cancer care options. It will help you understand your options, talk to your doctor, and make the best decision for you. Developed by Nihal Mohammed at Mount Sinai.

Chronic Pain

PainTracker™

PainTracker™ was developed by Mark Sullivan MD, PhD (Professor of Psychiatry and Behavioral Sciences, and Adjunct Professor of Bioethics and Humanities, University of Washington) to help clinicians track and improve the core outcomes of chronic pain management. It has been implemented for the web using cPRO. In some deployments, patients self-report information; in others, providers enter patient data.

You can try out both the patient and provider and experiences.

For the patient experience, follow "Create an Account".

For the provider experience, log in with the given credentials.

Demonstration Link

username: provider | password: provider_123

The demonstration system contains a patient "Harold Backpain", along with several other patients with even less realistic (!) data... Depending on how "fresh" the demo data are, the provider view may show some of these patients on the initial screen. The demo user can create new patient records, so feel free to create a patient and take the PainTracker™ assessment.

(The PainTracker™ demo was last updated on 2022-10-10)

Other cPRO projects

mPOWEr Post-operative Wound Assessment

mPOWEr adds photos, and a patient-centered, mobile-first approach to cPRO. Patients discharged from a hospital can communicate both pictures, symptoms and concerns about possible infection and healing of their surgical incision, using their own mobile device.

Demonstration Link


StayHome

StayHome is a mobile app that supports for people who want to find reliable information and resources, track symptoms and temperature, and record COVID-19 testing and results, and who may choose to share that information with public health agencies. You can create an account to start self-tracking, and access resources about COVID-19 even if you don’t have an account.

Demonstration Link


Cystic Fibrosis Lung Transplant Decision Support Tool

A web-based educational resource for pre-transplant CF patients with the goal to help people with CF learn about lung transplant, gain exposure to lung transplant recipient stories, and facilitate conversations with their CF doctor. Developed by Kathy Ramos at the University of Washington.

Features

The survey platform software can be extended and deployed via components to accommodate patient, clinic and research workflows, and to integrate the results into clinical care and research in any particular project setting.

Open-source Survey Administration Management

the methods and procedures by which the survey software is implemented and deployed to accommodate specific patient, clinic and research workflows, and by which the results are integrated into clinical care and/or research in any particular project setting.

Open-source Survey Platform

a web-based, interactive, database-driven, extensible survey and response framework used by these projects. This platform has served a broad array of clinical research and usual-care projects at institutions around the world.

Patient / Subject Management

There is a user interface for managing patients and/or participants through the clinic and/or research workflow, eg: Setting appointments, Consent for research participation, Launching survey sessions for data entry by staff and, Indicating that the patient can self-launch a survey session.

Patient-viewable results

The patient can view charts of longitudinal results for those instruments which are quantifiable. The patient can also elect to share these results with third parties (eg family members)

Clinician-viewable results

Clinicians can view and/or print reports for individual patients; researchers can download the entire data set for all patients.

Authentication and Authorization

There are two patient authentication modes: 1. The patient can log in from anywhere using their own credentials and 2. The system is essentially a kiosk, wherein a patient enters a staff-generated ticket number in order to access their survey sessions. cPRO can act as an OAuth 2.0 client for authentication against a variety of Identity Providers.

EMR Integration: HL7 SMART on FHIR

The system has a SMART on FHIR integration which enables access to cPRO from within Epic Hyperspace and MyChart (single sign-on), and subsequent reading of Epic data from cPRO.

EMR Integration: HL7 version 2

The system interfaces with Electronic Medical Record systems via an open-source Mirth HL7 transport layer, to communicate summarized reports and discrete data.

Survey response-driven alerts to staff

The system can trigger an email or SMS to staff when, for example, the patient indicates a very high level of depression.

Daily Activity Diary

An intuitive, AJAX-driven tool for patients to record their daily activities. The system automatically provides summaries and comparisons of activity of the course of time via interactive graphs. Patients can add notes about their activities. Staff/clinicians can view a patient's diary

Patient home page for the Personal Profile for Prostate Cancer (P3P)

Activity Diary (patient view)

Patient view of results (sparkline view)

Patient view of results (detailed chart view)

In context patient notification/interaction

Patient self-ranking of priorities

Provider "dashboard" for monitoring individuals longitudinally

Listing of patients

Editing of patient demographics, schedule, etc.

Configurations

cPRO systems combine these components with domain-specific content, which can be public domain, licensed, and/or proprietary, and is often implemented with additional coding/enhancements. Content may include survey question and answer text, branching decisions, tailored interventional content that is delivered based on business rules driven by the research aims, clinician tools (e.g., graphical summaries), and patient tools (e.g., teaching tips and charts). cPRO is written specifically to support the reuse of content across implementations. Proprietary content used in cPRO applications is not distributed as part of the open source code base, but non-proprietary content (eg., creative commons or public domain survey questions) may be distributed for reuse.

History

cPRO began in 2001 with Drs. Lober and Dr. Bryant Karras collaborating on an XML specification for "SuML: A Survey Markup Language For Generalized Survey Encoding", based extensions to the "Triple-s" open source standard. SuML was used for a public heath assessment, and was used as the technical basis for Dr. Donna Berry's "Distributed Health Assessment and Intervention Research" (DHAIR) program of patient-clinician communication research in oncology. The first DHAIR program released was the Electronic Self-Report Assesscment - Cancer (ESRA-C), the efficacy of which was demonstrated in a randomized clinical trial. DHAIR uses cPRO combined with content specific to oncology including: assessment and intervention content, workflows to support patient centered administration and to support integration in the clinical oncology setting, and formal usability testing of both the patient and clinician experiences.

Team

Research Partners

cPRO has evolved since 2001, through foundation sponsorship, implementation by clinical units as part of their "usual care" practice, and in parallel with extramurally funded research in several domains.
The following faculty and staff lead or have led initiatives that substantially shaped cPRO:

Bill Lober, MD MS Justin McReynolds, MS Donna L. Berry, PhD, RN, AOCN, FAAN Heidi Crane, MD, MPH Seth Wolpin, PhD, MPH, RN Barbara Halpenny, MA Mari M. Kitahata, MD, MPH Paul Crane, MD, MPH. Ardith Doorenbos, PhD, RN, FAAN David Tauben, MD Mark D. Sullivan, MD PhD


Technical Team

The University of Washington's Clinical Informatics Research Group has led the implementation of cPRO, and continues to host and administer several dozen cPRO systems. More about us here: cirg.washington.edu

Architecture/Design

Bill Lober Justin McReynolds

Developers

Greg Barnes Paul Bugni Amy Chen Ivan Cvitkovik Kenneth Long Daniel Lorigan Justin McReynolds

UI / UX

Amy Chen Sierramatice Karras

Alumni

Matthew Dockrey Trisha Smith Adam Solove Mark Stewart Eric Webster

Management

Justin McReynolds

Publications from cPRO projects