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      Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking

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          Abstract

          A new class of patient-driven health care services is emerging to supplement and extend traditional health care delivery models and empower patient self-care. Patient-driven health care can be characterized as having an increased level of information flow, transparency, customization, collaboration and patient choice and responsibility-taking, as well as quantitative, predictive and preventive aspects. The potential exists to both improve traditional health care systems and expand the concept of health care though new services. This paper examines three categories of novel health services: health social networks, consumer personalized medicine and quantified self-tracking.

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          Lithium delays progression of amyotrophic lateral sclerosis.

          Michela Ferrucci, Luigi Murri, Nicola Modugno … (2008)
          ALS is a devastating neurodegenerative disorder with no effective treatment. In the present study, we found that daily doses of lithium, leading to plasma levels ranging from 0.4 to 0.8 mEq/liter, delay disease progression in human patients affected by ALS. None of the patients treated with lithium died during the 15 months of the follow-up, and disease progression was markedly attenuated when compared with age-, disease duration-, and sex-matched control patients treated with riluzole for the same amount of time. In a parallel study on a genetic ALS animal model, the G93A mouse, we found a marked neuroprotection by lithium, which delayed disease onset and duration and augmented the life span. These effects were concomitant with activation of autophagy and an increase in the number of the mitochondria in motor neurons and suppressed reactive astrogliosis. Again, lithium reduced the slow necrosis characterized by mitochondrial vacuolization and increased the number of neurons counted in lamina VII that were severely affected in saline-treated G93A mice. After lithium administration in G93A mice, the number of these neurons was higher even when compared with saline-treated WT. All these mechanisms may contribute to the effects of lithium, and these results offer a promising perspective for the treatment of human patients affected by ALS.
          Article 0 comments Cited 147 times – based on 0 reviews     Review now
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            Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data

            Jeana H Frost, Michael Massagli (2008)
            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 health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood. Objective PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues. Methods Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other’s profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges. Results Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns. Conclusions Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient’s health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.
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              Mass. Curtails Free Vaccines for Older Children

              JANE ANDERSON (2008)
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                Author and article information

                Journal
                Journal ID (nlm-ta): Int J Environ Res Public Health
                Journal ID (publisher-id): 101238455
                Title: International Journal of Environmental Research and Public Health
                Publisher: Molecular Diversity Preservation International (MDPI)
                ISSN (Print): 1661-7827
                ISSN (Electronic): 1660-4601
                Publication date (Print): February 2009
                Publication date (Electronic): 5 February 2009
                Volume: 6
                Issue: 2
                Pages: 492-525
                Affiliations
                Research Associate, MS Futures Group, P.O. Box 61258, Palo Alto, CA 94306, USA
                Author notes
                [* ]Author to whom correspondence should be addressed; E-Mail: m@ 123456melanieswan.com ; Tel.: +1-415-505-4426; Fax: +1-504-910-3803
                Article
                Publisher ID: ijerph-06-00492
                DOI: 10.3390/ijerph6020492
                PMC ID: 2672358
                PubMed ID: 19440396
                SO-VID: 059e596c-3c44-4d6b-ae05-48ea83c9c083
                Copyright © © 2009 by the authors; licensee Molecular Diversity Preservation International, Basel, Switzerland.
                License:

                This article is an open-access article distributed under the terms and conditions of the Creative Commons Attribution license ( http://creativecommons.org/licenses/by/3.0/).

                History
                Date received : 9 January 2009
                Date accepted : 2 February 2009
                Categories
                Subject: Article

                ScienceOpen disciplines: Public health
                Keywords: internet,patient-driven health care,preventive health care,long-tail medicine,personalized medicine,health social networks,open source,health care delivery,quantified self-tracking,predictive health care
                Data availability:
                ScienceOpen disciplines: Public health
                Keywords: internet, patient-driven health care, preventive health care, long-tail medicine, personalized medicine, health social networks, open source, health care delivery, quantified self-tracking, predictive health care

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