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Patient-driven co-care innovations - Let the patients drive! Implementing patient-driven co-care innovations

There are four patient-driven co-care innovations in the research programme.

Genia

Genia is an e-health patient support system that enables children and young adults with cystic fibrosis (CF) to perform self-monitoring of symptoms, medication and well-being in the everyday management of their well-being.

It also supports information sharing with healthcare providers.

Patients have the possibility to choose what information they want to share with their healthcare providers. This information can then be used to co-create care plans for the patient.

The co-care goals are to create opportunities for mutual learning and shared decision-making.

Dream Scale

The Swedish Association of Young People with Rheumatoid Arthritis (Unga Reumatiker) writes on its home page “We are not our disease, we are our dreams”.

The Dream Scale helps children to identity goals in different areas of life and the degree to which formal care supports them in obtaining their goals.

The innovation stems from the patients’ determination to express their life goals and let those direct how they lead their lives and manage their chronic condition.

It was triggered by their care providers asking them to monitor their symptoms on a visual analogue scale, rating pain. Rather than to set their mind on symptoms that limited their daily activities, they wanted to focus on how they could enjoy education, physical activity and hobbies that helped them to fulfil their goals

Care maps

Care maps are social network diagrams that are used by patients to identify potential informal and formal caregivers.

The use of care maps may facilitate care planning, coordination and communication between stakeholders, and contribute to the identification of potentially lacking or unnecessary resources.

Care maps may also contribute to strengthening social relations and are thus instrumental for well-being.

The care-mapping instrument has been inspired by the Atlas of Caregiving project by the Swedish Brain Tumour Association.

Patient recovery college

Patient recovery college is a patient-to-patient education system, which allows individuals with mental illnesses to learn from other individuals with previous experience of mental illness.

It provides skill-development techniques, and it is believed to help persons experiencing mental ill-health to take control of and overcome or manage the challenges posed by their mental health difficulties.

A number of “Recovery Colleges” have been established in the National Health Service in UK.

A lead service user representative at the North Stockholm Psychiatry Center has started to organize a Recovery College with former patients as tutors.