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      Co-care: Producing better health outcome through interactions between patients, care providers and information and communication technology

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          Abstract

          The demands on healthcare are shifting, from caring for patients with acute conditions managed in a single-care episode to caring for patients with chronic and often complex conditions. With this shift comes a recognition that healthcare requires an interaction between patients and care providers, and of the interdependencies between these actors for achieving a positive outcome – that the results are co-produced. This paper introduces co-care, which stresses that the role of healthcare providers is to complement people’s own resources for managing their health so that patients’ and healthcare providers’ resources combined leads to the best possible outcome. This is done using tools and artifacts such as information and communication technology that enable knowledge to be created, shaped, shared and applied across the actors. Thus, in co-care, knowledge is not attributed to a single entity but distributed between them in line with the theory of distributed cognition. To put co-care into practice, several challenges must be addressed. This includes moving from profession-centeredness to patient-centeredness and from approaching care as a transformation of input to products to viewing care as linking needs and knowledge, as well as a substantial attitude and behavior change across healthcare stakeholders.

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          Patient reported outcome measures in practice.

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            Sharing Health Data for Better Outcomes on PatientsLikeMe

            Background PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?” Objective Using a cross-sectional online survey, we sought to describe the potential benefits of PatientsLikeMe in terms of treatment decisions, symptom management, clinical management, and outcomes. Methods Almost 7,000 members from six PatientsLikeMe communities (amyotrophic lateral sclerosis [ALS], Multiple Sclerosis [MS], Parkinson’s Disease, human immunodeficiency virus [HIV], fibromyalgia, and mood disorders) were sent a survey invitation using an internal survey tool (PatientsLikeMe Lens). Results Complete responses were received from 1323 participants (19% of invited members). Between-group demographics varied according to disease community. Users perceived the greatest benefit in learning about a symptom they had experienced; 72% (952 of 1323) rated the site “moderately” or “very helpful.” Patients also found the site helpful for understanding the side effects of their treatments (n = 757, 57%). Nearly half of patients (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. More patients found the site helpful with decisions to start a medication (n = 496, 37%) than to change a medication (n = 359, 27%), change a dosage (n = 336, 25%), or stop a medication (n = 290, 22%). Almost all participants (n = 1,249, 94%) were diagnosed when they joined the site. Most (n = 824, 62%) experienced no change in their confidence in that diagnosis or had an increased level of confidence (n = 456, 34%). Use of the site was associated with increasing levels of comfort in sharing personal health information among those who had initially been uncomfortable. Overall, 12% of patients (n = 151 of 1320) changed their physician as a result of using the site; this figure was doubled in patients with fibromyalgia (21%, n = 33 of 150). Patients reported community-specific benefits: 41% of HIV patients (n = 72 of 177) agreed they had reduced risky behaviors and 22% of mood disorders patients (n = 31 of 141) agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that participants who used more features of the site (eg, posted in the online forum) perceived greater benefit. Conclusions We have established that members of the community reported a range of benefits, and that these may be related to the extent of site use. Third party validation and longitudinal evaluation is an important next step in continuing to evaluate the potential of online data-sharing platforms.
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              Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking

              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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                Author and article information

                Journal
                Health Serv Manage Res
                Health Serv Manage Res
                HSM
                sphsm
                Health Services Management Research
                SAGE Publications (Sage UK: London, England )
                0951-4848
                1758-1044
                04 April 2016
                February 2016
                : 29
                : 1-2
                : 10-15
                Affiliations
                [1 ]Procome, Medical Management Centre, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden
                Author notes
                [*]Ulrica von Thiele Schwarz, Procome, Medical Management Centre, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Tomtebodavägen 18A, 17177 Stockholm, Sweden. Email: ulrica.schwarz@ 123456ki.se
                Article
                10.1177_0951484816637746
                10.1177/0951484816637746
                4887817
                024acd2a-787a-49b4-8a3d-a641af7aa4de
                © The Author(s) 2016

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 3.0 License ( http://www.creativecommons.org/licenses/by-nc/3.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Categories
                Primary Research
                Custom metadata
                February-May 2016

                co-creation,coproduction,health information technologies (hit),informatics,information and communication technology,management,patient-centeredness

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