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Health Data Program (HEDA) is an international network exploring the value of health data from the perspectives of patients, clinicians, and researchers.

Our mission is to facilitate a conversation around health data between individuals with patient or professional experience, research centres, health organizations, and policymakers. We are an international network, interdisciplinary in scope and participatory in nature aiming to generate a multi-faceted understanding of health data through mutual learning.

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so far

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Health Informatics Researcher

Maria is a health informatics researcher who studies what happens in different countries when patients are given access to online health records. With a background in human-computer interaction, she is interested in usability and design of patient portals, and how patients can be given a more active role in the management and creation of their records.

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Charlotte is a philosopher of medicine and health services researcher who studies the ethics of access to online health records. She is particularly interested in how health portals can be adapted to improve patient and clinician use.


Patient Researcher

Sara is a patient researcher with a background in engineering living with Parkinson’s disease since more than 35 years. She combines her engineering skills with her patient experiences to help others living with chronic diseases. Sara’s work and research includes patient-driven innovations, Quantified Self, self-tracking, personal science, patient-generated data, and patient-led research.

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Health Psychologist

Anna is a health psychologist studying the implementation of health records.  As a born immigrant she is passionate about expanding research on health data to traditionally underrepresented countries.

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Health Services Researcher


Gail is a psychologist and health services researcher with expertise in co-design and supporting the wider inclusion of patients from underserved groups in digital health research. Gail is particularly interested in exploring how patient online access to notes can impact on patients’ relationships with health professionals and supporting health professionals to write consultation notes that meet patients’ needs.


General Practitioner


Brian is a General Practitioner and Health Psychologist with research interests in the application of digital technology and psychological theory to improving patients' experiences of primary care.

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Patient Researcher

Jo is a patient researcher living with life-long ‘medically unexplained’ illness, recently diagnosed as Ehlers Danlos Syndrome. With a background in psychological therapies, Jo’s particular interest is in disability-affirmative, structurally (socio-politically) competent approaches to psychotherapy and wider healthcare. 

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