SCOOP Design Principles
These are working principles, meant to guide, be discussed, and be revised as we learn and as the community contributes to the goals and directions of SCOOP. They are meant to serve as useful guideposts while making decisions on architecture and design.
- Patient data does not leave the control of the practitioner.
- SCOOP will support multiple questioners on the network.
- Multiple EMRs will be connected together to answer questions.
- Questions will be answered from routinely collected data wherever possible.
- We do not know all the questions we will ask.
- The network will support a variety of question and study types relevant to primary care.
- The network will support participants in personal practice reflection and action.
- Privacy and security are ensured through software design.
Following from these principles, some design elements are worth highlighting:
– Data Quality is managed in the practice but can be monitored centrally.
– Network participants will control how much they engage with the network.
– SCOOP design supports multiple trust networks that will co-exist and will include research networks as well as quality improvement networks.
Patient data does not leave the control of the practitioner
One of the elements we heard from practitioners to feel more comfortable with engaging in a study network was that many would insist that patient data stays under their control. This also meant de-identified data did not leave control of the practitioner.
SCOOP will support multiple questioners on the network.
From the questioner side, we understood that there would be a need for multiple questioners. This could be handled through process or through the system design. We intend to handle this in the design to that multiple questioning networks could leverage the same infrastructure.
Multiple EMRs will be connected together to answer questions.
We are not designing SCOOP to be focused on a single EMR product, rather, the design will allow the capability for multiple EMR products to connect their own end points. This results in additional design complexity, but will allow more practitioners to engage over time.
Questions will be answered from routinely collected data wherever possible.
To reduce the burden of engagement in answering questions, routinely collected EMR data will be used. That is, the documentation in the EMR that occurs as part of routine care (e.g. prescriptions) will be used to answer questions rather than having specific data capture tools that replicate that data solely for study purposes.
A core data set will be developed and presented in a standardized manner so questions can be asked from multiple EMRs.
We do not know all the questions we will ask.
Unlike many individual projects where the question is known, as this is an evolving network, we do not know all the questions we will ask over time. Therefore, careful attention must be made to the design of the system to try to include multiple question types. Range of likely data elements needs to be standardized to support likely types of questions. Still, the data models will need to be extensible to accommodate specific questions in the future.
The network will support a variety of question and study types relevant to primary care.
Primary care is broad and the types of questions that need to be asked are also broad. SCOOP should support a range of question and study types – many but not all – that are relevant to primary care. Observational studies using data contained the EMR will, of course, be the “bread and butter” studies. In office intervention studies will also be supported. Given some of the other design principles, some studies will be hard to accomplish using the SCOOP infrastructure. A key gap will be linked studies – where SCOOP data is linked to other data sources.
The Network will support participants in personal practice reflection and action.
The same components that support questioning across a network can also support an individual reflecting on their own practice population. These features currently are supported in many EMRs today. However, the SCOOP design may provide several benefits:
- Using the SCOOP components does not impact the EMR performance.
- A range of questions may be asked in SCOOP that are not easily available from the EMR.
- SCOOP network questions can be shared to practices and replicated locally.
One key difference of local questions is that they CAN get patient identifiable data for quality improvement activities from their local data source. Thus, one of the key benefits of this approach is that a practitioner in a quality improvement network can comfortably contribute without sharing patient data and then, if there is an activity that needs clinical action (e.g. patients on a medication that is contraindicated) the practitioner can reuse the question in their office to discover WHO needs to be called in. This is not disclosure of data.
Privacy and security are ensured through software design.
Many of the elements above relate to ensuring control of the patient data is maintained in the hands of the practitioner. Further design work will be done to ensure that the network components limit risk of exposure. The details of this work will be described in detail in other documents.