Frequently Asked Questions

What are the outputs of this project?
1. This group will be developing 15-20 research data use scenarios that will be distilled into a smaller subset of use cases. The scenarios will be patient-centric and relate to PCOR/CER. The goal will be to tease out the specific requirements of each scenario as they pertain to policy, legal/ethical considerations, and some technical considerations that intersect with policy. Developing technical solutions; however, is out of scope for this project.
What is the expected commitment for a participant?
1. This will depend on the level of participation. The NORC team recognizes that the members of the work group have many other commitments. The team welcomes stakeholder participation even if participants are unable to join all of the workgroup meetings. We anticipate there will be a group of individuals who may be able to participate in most of the meetings, and will form a group of committed contributors. Others, who are interested and would like to contribute, may find it more feasible to join a few calls and review specific project documents and provide feedback to the NORC team as appropriate. Finally, a third group of work group members may choose to provide feedback on materials posted on the collaboration website without a formal explicit commitment.
What types of "stakeholders" are involved in this effort?

We have a diverse group of stakeholders including providers, researchers, technical standards experts, patient advocates, and federal representatives. There is a full list of active participants on this project available on the Project Stakeholders page.

How does this work overlap with PCORI and PCORnet, specifically the PCORnet demonstration projects, as the use cases are currently proposed?

PCORnet has already generated a number of scenarios and our team will take learnings from those scenarios and apply them to our work on the research data use scenarios, while avoiding replication of that work. Participants in the multi-stakeholder group who are/were engaged in PCORI and PCORnet projects can help guide the team in this respect.

Are the use cases are designed to address a wide variety of patients and caregivers? Are some types of use cases more or less of a focus for this project (e.g., pediatric use cases)?
1. The team plans to work with the multi-stakeholder group to distill the priority focus areas, but everyone should have an equal voice. The group may decide to include issues around pediatric use cases, if there is need or interest within the scope of the project. The team would like to start from an inclusive perspective to ensure the research data use scenarios cover all needed areas, and then we may narrow those areas down later based on further feedback from the workgroup and the broader community.
How will the team translate the research data use scenarios into use cases?

The team will begin with the research data use scenarios. Sometimes several scenarios can all be related to similar underlying requirements. In this way, several research data use scenarios will likely map to a smaller set of use cases. Other scenarios may have different preconditions, data requirements, privacy requirements that do require a separate set of requirements. The challenge will be to take different scenarios, align them with a set of consistent use cases, and avoid duplication.
The team may consider a workflow from a business perspective, and the types of data that have to be incorporated, collected, or combined to achieve a specific outcome, etc. The team will compile and analyze requirements throughout this process and then confirm them with the work group during the use case analysis.

Will the project be considering any kind data that may not be traditionally thought of as health-related data (e.g., income, where a person lives, the location of recreation centers and grocery stores, environmental health issues, air quality issues, etc.)? Will the team be considering these kinds of social determinants of health or is the project locked into a certain range of data types? Additionally, will the use cases be driven primarily by research interests?
1. The team is still in the process of determining what data sources we will include for this project. During the second meeting we will discuss the types of data that are in-scope and out-of-scope in greater detail.
2. The social determinants of health may be very relevant to the core components of PCOR in terms of patients having more control of over their research journeys.
How much of these proceedings is public? Is the team obligated to keep anything confidential?

ONC wants this process to be transparent in order to engage the broader public. Access to the initiative in terms of the website and the artifacts will be public
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Glossary Terms

PCOR = Patient Centered Outcomes Research: Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options. This research answers patient-centered questions. (PCORI)
CER = Comparative Effectiveness Research: Comparative effectiveness research is the conduct and synthesis of systematic research comparing different interventions and strategies to prevent, diagnose, treat and monitor health conditions. The purpose of this research is to inform patients, providers, and decision-makers, responding to their expressed needs, about which interventions are most effective for which patients under specific circumstances. (National Library of Medicine)
Precision Medicine Initiative (PMI): An initiative launched by President Obama and the White House, the Precision Medicine Initiative will pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients. (White House)