True patient-focused care requires listening to the VOICE of the patient herself. As she travels from health to sickness and hopefully back to health again, we must record and value her own words as she describes her pains, her values, and her needs.
Patient-Reported Outcome (PRO): Any report on the status of a patient's health coming directly from the patient without any interpretation or interference.
The patient can initiate communication of relevant medical data with the doctor to send outcomes, align priorities, and arrange the care they need.
The patient records her own experiences and pushes it to the health record. Her doctor can then spend more face-to-face time discussing her care, rather than conducting time-consuming interviews and performing data entry.
PRO tools allow the patient to report clinically relevant information at the point of pain, when it is most reliable, to inform the most appropriate treatments. Over the course of treatment, the PRO promotes accurate recordings of outcomes to advance changes when needed.
The patient is able choose treatments, personalized to their needs, by drawing on the past successes, experiences, and self-reported outcomes of many similar patients who came before them7,8,10
The patient provides invaluable data on treatment outcomes. The data is accurate, timely, and multi-dimensional. These qualities of data are possible only with many patients’ voices.
Patient portals offer communication between the patient and care team. Some EHR vendors offer the ability to send PRO questionnaires to patients, and few (e.g. Partners HealthCare) support structured data collection back into the EHR from those questionnaires. However, patient portals have some severe limitations and shortcomings14,15,17 which lead to limited use. Portals are only available to one in two patients, and of the half with access, half again don’t use them. In total, 25% of all patients use portals and under 15% of all patients use them to communicate with their care team.
Patient-reported outcome measures (PROMs) are instruments developed to measure a particular condition or outcome of a patient. They take the form of questionnaires, administered on paper or electronically (ePROMs), consisting of about 10-15 scale based questions. The instruments are heavily vetted and studied5 and accurately collect targeted data and associate that data with clinically relevant measures via a single score. More sophisticated electronic versions use an adaptive format that selects questions in response to answers.
"The platform must also be integrated into the electronic health record (EHR) system so that results flow into the point of care in real time in order to be actionable. And it must work nearly perfectly because neither patients nor providers have the patience for glitches.”
We’ve conceived several projects seeking to overcome these challenges and push PROs to realize their potential.
The benefits of being open source are three-fold. First, the extended community provides verification, support, and feedback, improving the quality and relevance of the process and product. Second, the mature product will provide services as well as an open source repository of resources, designs, and code for other developers and teams to utilize. Third, the open process has a positive impact on medicine by building community and interest in improving the state of PROs.
VoicePROM is a voice-first platform that collects short, scheduled, and structured data from the patient with convenient low-burden methods. The collected elements are drawn from a pre-built set of care-plan adherence measures and standard questionnaire formats
Voice-first solutions in the medical space are making slow but focused progress. Much of this progress is in the clinical documentation realm, allowing clinicians to not only dictate medical notes, but capture the structure data needed in the EHRs by voice (Nuance, Winscribe, and more). These however are confined to the clinic and do not help patients in their home-care and care plan adherence. On the other hand, there are Alexa Skills available that can help with medication reminders or with tracking symptoms, but they do not provide reporting and they are awkward to configure and use. To our knowledge, there are no publically available voice interfaces for collecting PROMs or questionnaires.
Using the Alexa and AWS services from the Amazon ecosystem, we’ve developed a simple smart speaker application. The patient reports medication adherence and sleep, and the platform records that data. We are currently working on a scheduling and reminder system to ensure daily reporting and to alert the user if a questionnaire is waiting completion.
Minimal Prototype: 8 weeks, 1.0FTE
Design and Development v1.0: 8 weeks, 1.0FTE
The Symptom Reporter helps a patient distill and clarify subjective symptoms and experiences into structured data that can be conveniently and consistently shared with clinicians in person, via email/text, or the Electronic Medical Record. Foreign language support will help patients prepare a report in English before an appointment so they can be more comfortable and confident in communicating their experiences and needs.
Similar products exist, but there are important differences. There are many online symptom checking tools (WebMD.com, Isabel symptomchecker.isabelhealthcare.com) that focus on providing a home diagnosis. Symptom trackers are popular mobile apps that allow a patient to keep tabs on a chronic or recurring symptom over time. Neither of these types of application focuses on aiding communication or creating a detailed and medically relevant report at the point of pain. The most similar app available is AHRQuestionBuilder, developed by U.S. Department of Health and Human Services. Some patient portals integrate a symptom checker (Epic - Mayo Clinic’s MyChart), but again, it does not provide any way to begin a conversation with a clinician regarding those symptoms. Hopefully, an open source tool such as openPRO - Symptom Reporter would help encourage such integration.
Design: 4 weeks, 1.0FTE
Development v1.0: 6 weeks, 1.0FTE
A review of systems (ROS) is a gathering of targeted medical information such as symptoms from a patient. Reimbursement models push doctors to ask more and more particular sets of questions, consuming precious in-encounter time. In the interest of time, issues that are medically relevant or important to the patient may not be addressed6, creating an incomplete picture from which the doctor assesses and plans treatment.
The ROS Reporter is an interactive web application will allow the patient to submit responses in privacy and comfort outside the encounter, either at home before a visit or while waiting at the office. Some clinics and offices distribute ROS forms, either by paper or electronically to patients when they arrive at reception or by a nurse. These questionnaires have several deficiencies:
Design: 4 weeks, 1.0FTE
Development v1.0: 6 weeks, 1.0FTE
The openPRO web service will offer low-effort administration of PROs for clinicians and patients. Any party can, ad hoc, initiate a PRO. The patient sends to the doctor via the service a de-identified PRO, which is assigned to the patient using separate established secure channels. The clinic can then insert the new data in the EHR, either by hand or by an import function implemented at the clinic’s side.
Design: 3 weeks, 1.0FTE
Development of minimal service: 6 weeks, 1.0FTE