FamORA

Family Caregivers and Online Record Access (FamORA) – exploring the impact of digitalization of healthcare communication on family caregivers

The project aims to investigate how the digitalization of healthcare communication affects family caregivers, with a focus on access to patient records via 1177. Family caregivers play a central role in care and support, but despite this, many lack the opportunity to obtain the necessary information about the care they help coordinate, especially since the proxy function for patient records was removed in 2018. This is particularly true for older individuals and their relatives.

The goal of the project is to map out the consequences this has had for older patients and their caregiving relatives, as well as to explore their needs and wishes regarding future solutions for proxy access. Through a combination of methods, including a national survey and interviews with older people and their family caregivers, we collect both quantitative and qualitative data. We will also conduct ethical analyses and co-creation workshops to develop recommendations for future digital solutions.

The results are expected to provide guidance to decision-makers and developers of e-health services, as well as create a more inclusive healthcare system where relatives receive the support they need to fulfill their important role.

The project is funded by the Kamprad Family Foundation and runs from September 2025 to August 2028. It is led by Maria Hägglund, Professor of Implementation Science at Uppsala University.

The project officially began in September 2025, and we will use this blog to share news and updates along the way! Welcome to join us on our journey! https://famora.blogg.uu.se/