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Innovate together – and the result will be so much better! inspiring insights from Co-creating a digital Alzheimer's guide together with recently diagnosed patients. Passed

Tuesday May 14, 2024 16:37 - 16:44 G2

Moderator: Filipa Ventura
Presenter: Maria Cavalli

Track: Digitalisation and eHealth

In response to the challenges faced by those diagnosed with Alzheimer's and their families, our collaborative effort in Sweden initiated a transformative project. Teaming up with patients, caregivers, healthcare experts, and researchers, we embarked on co-creating an innovative digital solution: the Alzheimer's Guide. We're thrilled to share the process of our collaborative effort, showcasing how patient involvement significantly enhanced our platform's intelligence. The journey involved gathering needs and determining content through surveys, patient-focused focus groups, engagement with family members, healthcare professionals, and ongoing collaboration with patients in a dedicated working group. Over 400 participants contributed to our collaborative workshops, shaping the content creation process. Our focus was on crafting a holistic platform rooted in patient needs and emphasizing personalization. Patient insights were fundamental in shaping the digital guide's content, addressing not only disease-specific information but also broader aspects of life. The platform aims to holistically support patients beyond medical aspects. The platform's intelligence is credited to our patient working group, resulting in a universally designed and customizable platform. Personalized information became paramount, especially for individuals with cognitive decline. Filtering and emphasizing relevant information were crucial, considering diverse needs—such as those of a mother in her 50s with teenagers and an 80-year-old widower—distinctly different in their requirements. Launched in November 2022, the Alzheimer's Guide has garnered over 2000 users in Sweden, owing its success to our partnership with patients. The guide stands as a user-friendly platform with unique features. We invite you to join us, learning more about the needs and our collaborative process. Listen to the voices of our patient representatives discussing their involvement in creating supportive resources for those impacted by Alzheimer's disease! 

Language

English

Seminar type

Pre-recorded + On-site

Lecture type

Orals

Conference

GCPCC

Authors

Maria Cavalli

Lecturers

Profile image for Filipa Ventura

Filipa Ventura Moderator

Junior Researcher
Nursing School of Coimbra, Coimbra, Portugal

Filipa Ventura has a clinical background in oncology nursing and earned a PhD in Health Care Sciences by the Sahlgrenska Academy (2016). Filipa worked both as a general nurse and an oncology nurse, in Portugal and in Sweden, for about seven years.
She is the principal investigator of one project, regional coordinator of an international research work and collaborates as an investigator in various projects.
In the domain of health care sciences, Filipa carries out research to support the person undergoing cancer treatment in illness assessment and management grounded on person-centred care principles and through eHealth.
From the methodological point of view, she is interested on research methods that allow exploring complex eHealth interventions, particularly pragmatic trials, mixed methods and interpretive description.

Profile image for Maria Cavalli

Maria Cavalli Presenter

Founder
NADIO

Maria Cavalli, project manager for the Alzheimer's guide, is an accomplished social entrepreneur with a personal drive that stems from her father's diagnosis of young onset Alzheimer's. Inspired to make a difference, she co-founded a Healthtech company in 2008. The company is named NADIO, which is an abbreviation for "Need Ask Develop Implement Organize." Their digital services for caregivers "A good place" and "the Dementia pilot" can be found in 25 municipalities. "the Alzheimer's guide" serves as a nationwide digital platform co-created and designed for recently diagnosed patients.

Maria has an extensive background as a Senior Manager in Elderly Care and as a Project Manager in Healthcare Improvement . She is on the board of the BPSD-registry, a Swedish National Quality Registry. Maria is also a founding member of the Swedish Network for Young Caregivers (SNUA). In 2023, Maria received the Alzheimer Life Foundation's award for her work with the Alzheimer´s guide.