Medicine 2.0'08 (Toronto, Canada)
Background: This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their healthcare providers. While this type of record does seem to have beneficial effects for the patient-ph...
Medicine 2.0'09 (Toronto, Canada)
Patients Informing Practice: Post-Marketing Drug Data in PatientsLikeMe, an Patient-Centered Online Community (closing keynote - winner of the JMIR Medicine 2.0 Award 2009)
Background: Typically, evaluating a new use of an existing drug is either expensive and time consuming or anecdotal and unstructured. In some cases, researchers conduct clinical trials to test off-label uses. Yet in many situations where drugs are off-patent, or are only used by a small population, providers and patients must rely upon their own individual-level experience to inform clinical practice. In this work, we explore how a patient-centered online platform could supplement trials to c...
Medicine 2.0'11 (Stanford University, USA)
Combining Social Media and Virtual Coaching for building open cooperative care communities.
This project examines the problem of how to keep the growing population of older people and those with chronic conditions physically and socially active. In this presentation, we present ideas on the possible application of ambient assisted living and e-health to help people live healthier lives. The ideas are developed in the context of city renewal and smart city program, combining end user care organizations, housing companies, the city council, volunteer and non-profit organizations, univ...
Formulating a Design Process for Medicine 2.0: The Case of Kanker.nl
Background Medicine 2.0 presents opportunities to develop new patient platforms, but existing projects have had mixed success. A key design problem concerns the tension between developing designs to fit user needs versus designs that anticipate needs unknown to users. How do we design Medicine 2.0 applications that are innovative and support novel modes of patient participation, while still addressing user needs? As a team we are drawn to the ideas of User Centered Design (UCD), where develo...
Medicine 2.0'13 (London, UK)
Anonymity versus Privacy: Selective Information Sharing in Online Cancer Communities
Background: Active sharing in online cancer communities benefits patients. However, many patients refrain from active information sharing because of privacy concerns. Research on privacy emphasizes data security and confidentiality and focuses on electronic medical records. Consequently, privacy concerns around information sharing in online communities remain poorly understood. Objective: We argue that patients think about the costs and benefits of online information sharing, weighing the p...
Medicine 2.0'14 Europe (Malaga, Spain)
The Strategic Use of Self-Disclosure in Health 2.0 Communities
Background: For Health 2.0 communities to function, users must get responses to health problems in a timely manner. This project explores the use of self-disclosure as a tactic to elicit these responses. Self-disclosure is well studied in the area of interpersonal communication and relationship formation. Self-disclosure builds trust, intimacy and more importantly for the current study, is generally met in kind, garnering reciprocity in others. In offline dyadic relationships, self-disclosur...
Full Paper Publications
Journal of Medical Internet Research
Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data
Sharing Health Data for Better Outcomes on PatientsLikeMe
Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe
Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities
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