Patients in the driver’s seat! A multimethod partnership program on patient-driven innovations
The programme (PiF) operates in close cooperation with people with long-term illness and their family members as well as the healthcare providers that serve them.
Building on this partnerships, the programme builds on patient-driven innovations to promote self-care and co-care and studies their implementation into everyday health services and the daily life of patients.
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News
How mHealth platforms can provide pro-active and patient-driven follow-up care: a case study from Sweden
Data Saves Lives writes about how the Cystic Fibrosis community in Sweden partnered with academics and technology developers to create an app to track symptoms and the impact of treatment to support better clinical care.
New study examines the attitudes of healthcare professionals regarding Lead patients
Therese Scott Duncan, postdoc at the Department of Learning, Informatics, Management and Ethics, has investigated how Lead Patients self-care has been received by healthcare professionals. The article ”Empowered patients and informal caregivers as partners? A survey study of healthcare professionals’ perceptions”, is published in BMC Health Services Research.
New publication from the Patients in the driver's seat: Lead patients' experiences of the COVID-19 pandemic
In a recently published study in BMJ Open, the authors investigate how the engagement and experiences of Lead patients were during the early Covid-19 pandemic. Lead patients can be defined as patients or relatives who use their experiences and knowledge to improve their own or their relatives' care situation and/or healthcare.
New study from PiF shows that learning networks play an important role
In a recently published study from the Patients in the driver's seat research program at Karolinska Institutet, the authors examine the role networks can play for the chronically ill in a societal crisis like the COVID-19 pandemic.
New publication about Lead Patients self care
On November 16, 2022, a new study on Lead Patients was published: "Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers" in the Journal of Participatory Medicine. One of the co-authors, who is also a Lead Patient and researcher in Patients in the driver's seat, Sara Riggare, is here interviewed about the study.
Publications from PiF
Patient-driven innovations studied in PiF
Genia
Genia is a mobile patient support system (mPSS) for young cystic fibrosis patients. It’s designed to establish patient, family and health care team partnerships, with an emphasis on placing the young person at the center of the decision-making process.
Dream Catcher
The Swedish National Organization for Young Rheumatics - Unga Reumatiker - writes on its homepage, “We are not our disease, we are our dreams”.
Patient Recovery Education
Patient Recovery Education is a patient-peer education system that allows people experiencing mental illness to learn from others with previous experience of mental illness.
Lead Patients
The Lead Patients innovation aims to support those patients wishing to take a substantial role in advancing their own and others’ self-care and demonstrate to health care and society what some patients are capable of. This is a social innovation that targets improvements in health systems by enabling substantial contributions from patients and informal caregivers.
Care Maps
The Care Maps aims to identify and strengthen social relationships relevant to life-changing events. The use of a Care Map may also facilitate care planning, coordination and communication between stakeholders and contribute to the identification of potentially lacking or unnecessary resources.