Background
The Swedish national health information exchange platform
The health innovation platform
Patients’ online access to their EHR
Care and rehabilitation planning
The web-based tool ‘My Care Plan’
Methods
Analysing the stroke rehabilitation plan case
Defining a patient case in consultation with a clinical expert
Visualizing the patient case in a patient journey model
Developing usage scenarios
Analysing the national HIE platform and HIP resources
Study of documentation
Key stakeholder interviews
Mapping the patient case and scenarios to the national HIE platform
Results
Patient case and visualization of information flow in a patient journey
Fictive patient case
At the hospital | At the rehab clinic (two months) | At home with the neurology team |
---|---|---|
- Admission cause: Mild nausea, paralysis of right side, slurs - Social: lives with husband and two children - Earlier disease: Hypertension and dyslipidaemia. Has contact with healthcare - Tobacco: not tested - Alcohol: not tested - Driving: has a driving license - Current drugs: Simvastain 20 mg, Enalapril 10 mg - Investigations: Computer tomography, bleeding omitted - Assessment: Reduced function in the right side, arm and ben, Aphasia, hard to understand. Patient is concerned about her situation and how it will affect her children. - Action: Blood thinning and clot-dissolving medicine. - Computed tomography, bleeding excluded. - Physiotherapist: The patient feels slightly sick for a jog and becoming paralyzed in the right side. The patient cannot walk without support. Gets up with easy-care support. - Occupational: MOCA test. Patient does not know what day it is and not where she is. - Speech therapist: Boston Naming Test - have great difficulty naming several of the pictures. The patient has a good understanding of the situation, but it is difficult to follow long complicated instructions. - The patient’s children have also talked to the counsellor. - Speech therapist, Physiotherapist, and occupational therapist contact - Continued counsellor contact - Doctors. The patient is discharged from the clinic. She has improved during the hospital stay. Referral to a rehabilitation clinic. | - Admission Cause: Weakness in the right arm and leg. Aphasia. Do not remember everything that happened in the Emergency Department. - Occupational therapy - Cognitive screening, arm and hand exercise - Speech therapy language training and literacy classes - Neuropsychologist - investigation. The patient gets tired quickly, can only read short moments. | - Physical therapy - The patient has constant pain on right side and gets hurt by the slightest movement. Despite this patient practices with the physiotherapist. She also exercises three hours / day. She is informed that even everyday tasks are training. - Occupational therapy - kitchen training, as well as shopping. - Speech Pathology - language training as well as reading and writing exercises. - Summary of neurology team’s efforts. The patient now has a diary, which she can enter the date of exercise and health visit. The patient gets still tired easily and must therefore rest frequently. - It is important for her to plan their activities so that she can manage her daily work. - The patient can now walk longer distances and can use her right hand. She has improved linguistically - may now take part in conversations with several people. She also reads and writes better, but not enough for her to start working. Fatigue also prevents her from long working days. - She is concerned about their hidden disabilities such as brain fatigue and personality change. - Patient is considering why she was diagnosed with stroke. - Neurology team provides continuous information about stroke and its consequences. The patient also receives explanation of what and why she should train and motivate her to continue training. Patient is also encouraged to re-connect with the family doctor. Neurology team is also in contact with family doctor during the treatment period. - Patient is also encouraged to contact the patient associations who are in the locality and informed of SMIL (Stroke in the middle of life). SMIL also has a Facebook group where you can talk with others who have had a stroke. The patient is also informed that she can through the family doctor apply for specialist planned rehabilitation. |
Mapping of the journey model with the patient information needs
Available service contracts and APIs
Necessary information identified in previous studies | Potential eHealth services | Service contract | APIs available for citizen services and services for healthcare professionals | Comments |
---|---|---|---|---|
An overview of what has happened | My discharge notes | Not Available | Not available | |
An overview of what is planned | My calendar | Available | Not available | |
My referrals | Available | Available (Referral status for citizen and Referral response for care professionals) | Referral status is available for both citizen services and care professionals | |
An overview of health related information | My health information (diagnosis, symptoms, disease history) | Available | Available (diagnosis) | Diagnosis is available both for citizen services and care professionals. |
My medication | Available | Available (Medication data for citizen, Medication list for care professionals) | Available for both citizen services and care professionals | |
An overview of risk factors and disabilities | My risk factors | Available | Available | Since the risk factors are documented in patient’s EHR, the information is possible to retrieve through ‘GetCareDocumentation’ Available for both citizen services and care professionals |
My disabilities | Available | Available (PADL + Disability for citizen, Function status for care professionals) | ||
An overview of care providers contact information, their specialties, and responsibilities | My care contacts | Available | Available (contact information for healthcare) | Available for both citizen services and care professionals |
Measurement and documentation of health related parameters | My diary | Not available, patient’s own information | Not available | |
Support for sharing of personal observations | ||||
An overview of the goals and planned activities | My rehabilitation plan | Available | Available (My care plan) | My care plan also include rehabilitation plan. However, it is only available for care professionals |
Rights and responsibilities regarding e.g. continued rehabilitation, assistive devices and health insurance | My rights & My responsibilities | Not available, available publically | Not available | |
An overview of patients associations and social networks | My patient organizations and support associations | Not available, Links to 1177 or insurance agency | Not available | |
My assistive tools | Not available | Not available | ||
Information about me e.g. my personal data, my contact details | Available | Not available | ||
About stroke | Not available, common information | Not available | ||
Reminders | Not available, Patient’s own information | Not available |