My Care Plan – Standardized Quality and Customized Patient Information for Increased Selfcare and Safety Might Work Better

Key Contextual Factors

• Sweden is divided into six medical regions. Each medical region includes a regional cancer centre (RCC), and collectively, the RCCs coordinate cancer activities.
• Sweden has a national digital platform to which all regions are connected, and where all patients can log in with their electronic identification to access different digital services (e.g., view medical appointments, medical prescriptions and parts of their electronic health record).
• Other responsible organizations include Sweden´s Association of Local Authorities and Regions (SALAR); Inera, a company owned by SALAR, that coordinates the development and management of joint digital solutions that benefit the general public, and employees and decision-makers in county councils, regions and municipalities; regions that have volunteered to participate with delegates in the working groups responsible for patient information; and individual cancer clinics that have participated in the pilots.
• Target groups are cancer clinics within all Sweden´s region.
• Patients will also be able to take part of their individual My care plan on the platform, if their clinic has connected to My care plan and activated, and individualized one for them.

Key Components/Steps

• 2013 – RCCs with patient representatives develop the concept of My Care Plan and what it shall contain.
• 2017 – Pilot initiated in three cancer clinics to test a digital platform for My Care Plan (January) and evaluated (September).
• 2018 – Pilot extended in 20+ additional cancer clinics.
• 2019 – Extended pilot evaluated (April to August) and decision made by RCCs to scale My Care Plan to the national level by producing and administering standardized clinical information for cancer patients and making it available on both the digital platform and paper (October).
• 2020 – Formation of eight national working groups, each with a mission to produce the information for My Care Plan for eight specific diagnoses (January to December); preparation of support documents (for decisions and way of working), manuals, tutorials, etc. (April).
• 2021 – Publication of national My Care Plans on digital platform, ready for implementation (January).

Main Impacts / Added Value

• Health care personnel can give patients high quality information without having to produce it themselves, which can be customized to individual patient very easily on the digital platform.
• Patients receive quality information that is standardized across Sweden that will increase patient safety and self-care.
• Patients are more likely to receive relevant information, when care personnel are supplied with nationally prepared and prepackaged information that is ready to activate on an existing digital platform.

Lessons Learned

• It was important for the project to be led by an existing national association/organization (the  RCCs), with (1) a national mandate within the cancer area; (2) an existing national network; and (3) an existing working model, with national pathways and national working groups.
• The existence of a digital platform that all of Sweden´s regions are connected to, and the Swedish citizenry has access to was critical.
• The importance of project management with health care experience, specifically within the cancer area was also a key factor in implementing this program.

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