Patient-recorded Observations in PHR [DRAFT]
[ADD CONTENT FROM XLS / WORK PROPOSALS FOR YHCR]
Problem statement
It is currently difficult for clinicians to access up-to-date, accurate and regularly recorded observations. This is because it can be difficult (and not desirable) to make these observations within primary care settings (either due to patient reluctance/availability, pandemic limitations or other factors). This means that:
Clinical decision making is hampered by not being able to see trend data for a given observation metric (i.e. there are not enough data points across a period of time to make an informed decision);
Observations captured within a clinical setting may not be as representative as those that are captured in a home setting (due to patient nervousness/anxiety, other situational factors - e.g. patient may have had to exert themselves prior to observation).
Proposed Solution
Provide a user interface in the Helm Person Held Record that allows patient/citizen users to record information relating to observation measurements they have captured in a home setting.
Observed measurements to include:
Blood pressure
Peak flow meter measurements
Weight
Pulse
Peripheral Oxygen Saturation
It should be possible to record the following for each observation:
Unit
Value of measurement
Date and time (of observation measurement)
Notes
In addition, the system should automatically record the date recorded and patient (as subject and performer)
Summary Flow
To do - Visualisation of data from capture to presentation. [image links inline]
Patient capture of an observation using tools in the home.
Patient entry of observation data into Helm.
FHIR mapping in SoS
UI presentation in Helm with historical data.
UI presentation in YHCR Care Portal (based on Helm panel above) - with additional functionality for clinician views
[CONFIRM] Clinician roles and workflows
Systems Development
Helm
User interface to allow patient capture of observation measurements (measure, unit, value, date, subject, notes).
User interface to display historical measurements (including metadata).
YHCR Care Portal
Develop interface to display patient-recorded observations shared via YHCR / SoS. This will be based on work completed in Helm as it shares the same architecture.
Support the development of the user interface within the Leeds Care Record (LCR) in order to present observations derived from Helm via YHCR / SoS.
User journeys
[CONSENT POLICY DEFINITIONS]- LCC AS DATA CONTROLLER FOR HELM
Theme | Observations |
Initiative | HOB001 - Patient recorded observations from Helm to System of Systems |
User Journey Summary | Patient captures and records personal observations in Helm. |
Information provider roles | Patient, citizen |
Information consumer roles | GP, practice nurse, care coordinator, secondary care clinician |
Supporting Work |
|
Alignments / Support |
|
FHIR profiles and resource mapping
Observation data will conform to the following FHIR profile:
https://www.hl7.org/fhir/STU3/observation.html
Observations are a central element in healthcare, used to support diagnosis, monitor progress, determine baselines and patterns and even capture demographic characteristics. Most observations are simple name/value pair assertions with some metadata, but some observations group other observations together logically, or even are multi-component observations. Note that the DiagnosticReport resource provides a clinical or workflow context for a set of observations and the Observation resource is referenced by DiagnosticReport to represent lab, imaging, and other clinical and diagnostic data to form a complete report.
Uses for the Observation resource include:
Vital signs such as body weight, blood pressure, and temperature
Laboratory Data like blood glucose, or an estimated GFR
Imaging results like bone density or fetal measurements
Devices Measurements such as EKG data or Pulse Oximetry data
Clinical assessment tools such as APGAR or a Glasgow Coma Score
Personal characteristics: such as eye-color
Social history like tobacco use, family support, or cognitive status
Core characteristics like pregnancy status, or a death assertion
Mandatory and Must Support Data Elements
The following data-elements are mandatory (i.e data MUST be present) or must be supported if the data is present in the sending system (Must Support definition). They are presented below in a simple human-readable explanation. Profile specific guidance and examples are provided as well.
Each Observation must have:
a patient (as subject)
a date and time
a unit
a value
Each Observation may have:
a note
UI design guidance
To be elaborated during construction sprints:
UI control elements - Getting input, navigation, data display / content structuring
Advanced UI elements - History, provenance (multi-data point rendering), summary/detail, graphing UI