Description
Note:
Might be considered as a more specific version of issue 46: #46
However, as I have a specific project implementing this as a use case across decentralized Linked Data I wanted to add it specifically.
As an obese patient, I want to receive adequate treatment and lifestyle advice in order to lose weight in a healthy manner.
Preconditions:
What conditions must be in place or assumed before this use case can begin?
The patient must be a user of a LWS system with control of their data. This LWS should contain a large variety of data:
- Lifestyle data, e.g. measured with fitness trackers, wearables, smartphone applications, etc.
- Health sensor monitor data, e.g. smart scale, heart rate sensor provided by the hospital before and after surgery, etc.
- Electronic health record from the hospital
- Electronic health record from other caregivers, e.g. GP, dietician, psychologist, physical therapist, etc.
- Medication data
- Associated caregiving network
- Genetic data
- Etc.
Trigger:
What (user or system) event or action initiates this use case?
The patient wants to loose weight and after a long dietary journey, the physician recommends bariatric surgery, which requires close follow-up of the patient.
Actors:
Describe the primary actor, and any other relevant actors involved in this use case
As an obese patient, I want to receive adequate treatment and lifestyle advice in order to lose weight in a healthy manner.
As a physician, I want to give optimal treatment advice (bariatric surgery, medication, diet, etc.) to my patients based on ALL available data.
As a dietician / physical therapist / GP / psychologist / etc., I want to support my patient optimally, based on all available lifestyle information, but also information from other caregivers.
As a health insurance company, I want to determine if the patient is eligible for reimbursement of the surgery based on prior medical information (e.g. diet efforts, etc.).
As a governmental agency, I want to gain high-level insights into people struggling with obesity, treatments and their success in order to adjust policies.
As a pharmaceutical company, I want to gain insight into medical and surgery treatments and their success rate or symptoms (real-world evidence), in order to optimize them.
Distinction:
What unique challenges or distinguishing factors (like technical issues, user experience needs, workflow integration, etc.) are associated with this use case?
- A large amount of actors
- Integration with legacy systems (e.g. at hospitals)
- Duplicate (but also maybe slightly different or even conflicting) information across caregivers
- Stringent privacy constraints, both from a legal and ethical perspective
- Temporal medical data
- Patient currently not always owner of the data about themselves
- Need to express trustworthiness of the data, e.g. data from medical grade sensor more reliable than commercial sensor
- Large amounts of data need to be stored for a long time (long patient journey, capturing the whole lifestyle journey of the patient)
Scenario:
Describe an ideal or happy-case scenario where this use case would play out as intended.
All the patient's caregivers and physicians can optimally attune their treatments and advise based on the personal situation of the patient. The patient automatically proves the requirements to receive reimbursements. The patient is notified of experimental medication or treatments they may be eligible for and/or can easily make their data available for research purposes.
Alternative case(s):
What alternative flows or variations should the system handle for this use case?
- Patients may refuse that (parts of) their data are shared with particular caregivers / physicians / governmental organizations / pharmaceutical companies
Error scenario:
What unexpected issues or errors might arise, and how should the system handle them?
- Some actors might be reluctant to share data with the LWS of the patient (e.g. due to trust, privacy, accountability, etc.)
Acceptance Criteria:
What conditions or criteria must be met for this use case to be considered successfully handled? What limitations are acceptable?
- All processing of any data only happens with consent of the patient
- Ethical guidelines are followed
- Laws and regulations are followed
- Patient receives personalized treatment / advice
- Physicians can EASILY access the required data for personalized treatment / advice
- Research advances and policies can be attuned to the real-world evidence
References:
List any relevant resources or examples that could inform this use case, possibly from other domains or solutions.
This use case is specifically being worked out, using the Solid specification, with decentralized permissioned Linked Data in pods, within the imec.icon project PACSOI.
More information about PACSOI: https://www.imec-int.com/en/research-portfolio/pacsoi
We have detailed scenario descriptions available of the complete flow and each role the actors should take up that I could ask the project partners to make available to the community.