Maria Hägglund – “With Better Tools, Better Processes, and Better Ways of Letting Family Carers In, We Would Have Much Better and More Efficient Care”

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Maria Hägglund – “With Better Tools, Better Processes, and Better Ways of Letting Family Carers In, We Would Have Much Better and More Efficient Care”

Senior researcher with the Health Informatics Centre at the Karolinska Institutet discusses benefits of facilitating better communication between family carers and clinicians

Family caregivers are an integral part of health care systems around the world. While they often take on the role of being a home nurse, these family carers often take on the role of health care coordinator, balancing appointment schedules, medications, and communication between clinicians and specialists. Maria Hägglund, a senior researcher at the Health Informatics Centre at the Karolinska Institutet in Stockholm, recently attended Salzburg Global Seminar’s session Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship. During this session, she discussed her research into patient access to electronic health records and shared a personal story about the impact technology can have on family carers.

“From my experience, health care is quite fragmented – you don’t know the different persons involved in your family member’s care, you might not know their names, you might not have their contact details,” Hagglund says. “Having access to that type of information is essential when you’re trying to coordinate things.”

Hägglund currently runs a study called PACESS, evaluating the introduction of patients’ online access to their electronic health records in Sweden and has been involved in national eHealth projects for years. However, the researcher says she personally experienced the importance of access to technology when her father became ill with cancer.

After running into instances where her father’s health care teams failed to communicate, she took on the role of an information carrier, coordinating communication between clinicians on some occasions.

“I think most family members are actually happy to do this job. It’s tiring, it’s exhausting, but you feel like you’re actually helping. And in a situation where you are otherwise quite helpless, it’s actually a good feeling,” she says.

Hägglund believes providing access to information will help repair relations between family carers and clinicians; a relationship often strained by the stress of caring for a loved one.

“By not being allowed, or given the right tools to participate and to help, that willingness to help is turned into a frustration and an anger,” she says. “I think that is why many family members are perceived as difficult. I think with better tools, better processes, and better ways of letting family carers in, we would have a much better and more efficient care.”

Hägglund believes technology will play an increasingly important role in health care moving forward, especially for carers seeking support systems. While caring for her father, Hägglund turned to online groups not only for emotional support but also for additional information about clinical trials and medications.

“When my father was offered to join a clinical trial, of course, I could read all the materials about the trial, but I could also go onto this forum and ask, ‘Has anyone heard about this new medication? Maybe somebody is already on it; what are your experiences?’ And I quickly got a lot of excellent feedback,” she says. “Of course patients have a much greater interest – it’s a matter of life and death if you are a patient or family carer, so the willingness to share and help each other is also very great.”

Despite being an advocate for the importance of data sharing in health care, Hägglund says clinicians must remember patients own their data, and shouldn't be looked at as merely a data source; an issue she says happens quite frequently in clinical research.

Hägglund says she is grateful to have gained an international perspective on eHealth and patient-clinician relationships as a participant at Salzburg Global. “To see that the problems and challenges we are experience are experienced all over the world,” she says. “We are all sort of in the same house – the same Schloss – working towards mutual goals.”


Maria Hägglund attended the Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship. This program is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session was supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553.

Maria Hägglund attended Salzburg Global Seminar’s session Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship