The patient-driven co-care innovations in the research programme

A brief introduction.

Genia - a patient-support system and lifelong learning system

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.

The system is designed for observations, reflections and sharing in the family living with long-term illness and also to share information with health care providers, giving the patients choice over which information they want to share and with whom. This information can then be used to co-create care goals and plans and provide opportunities for mutual learning and shared decision-making.

The Genia patient support system is in an early stage of use at all four cystic fibrosis (CF) centers in Sweden and is integrated with other health information systems that are used in clinical practice.

Dream Scale - shifting focus and actions from reducing pain to achieving dreams

The Swedish National Organization for Young Rheumatics - Unga Reumatiker - writes on its homepage, “We are not our disease, we are our dreams”.

The “Dream scale” innovation aims to help children and young adults identify goals in different areas of life and the degree to which formal care would and should support them in obtaining these goals. It aims to use these goals to direct how they live their lives and manage their long-term condition.

Originally, care providers had asked them to monitor their symptoms on a visual analogue scale and rate their pain. However, rather than considering the symptoms that limited the patients’ daily activities, the patients wanted to focus on how they could enjoy education, physical activity and hobbies that would help them fulfill their goals.

Care Maps - strengthen relationships in the presence of life-changing events

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.

The identification of social relations, that is, the Care Maps, may also help health care providers learn and understand the important relationships in a person’s world and make them sensitive to what type of support and relationships exist for different patients. This has importance for deciding what type of care and services are needed for each individual.

A “pen and paper” care-mapping instrument has been developed and pilot tested, inspired by the Atlas of Caregiving project. The innovation is being developed by the Karolinska University Hospital and the Regional Cancer Center Stockholm-Gotland and is driven by members of the Swedish Brain Tumor Association. A close collaboration exists with all six tertiary care cancer hospital departments in Sweden.

Patient recovery Education - patients learning from patients' lived experience

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.

Patient Recovery Education provides basic information about topics such as service systems (e.g., health care, social services), how to deal with stigma, social situations, friends, loneliness and self-care that are expected to help the participants in their recovery.

Patient Recovery Education is inspired by the “Recovery Colleges” in the National Health Service in the UK. The education is organized by persons with former mental illness who are employed at the North Stockholm Psychiatry.

Lead Patients - patients at the forefront of self-care

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.

The starting point was Sara Riggare’s frustration with the lack of a Swedish word to describe the behaviors and actions she observed among several patients and informal caregivers. Inspired by the concept of “lead users”, she created the Swedish term “spetspatient” (“lead patient” in English), which was included in the Swedish Language Council’s annual list of new words for 2017.

Lead Patient is not just a term; it is also a social innovation to exemplify what responsibilities and actions patients and informal caregivers are capable of taking and to create a social movement toward improved patient roles in health systems