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      Digital health now and in the future: Findings from a participatory design stakeholder workshop

      research-article
      Digital health
      SAGE Publications
      Design research, design sociology, digital health, health data, living lab, participatory design, stakeholders

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          Abstract

          Objectives

          While digital health technologies hold potential for improving healthcare and the generation and dissemination of health information, there are many issues to be resolved in facilitating their provision and efficacy and ensuring ethical management of personal health data. In the face of high-stakes digital health initiatives, debates and controversies, eliciting the views and experiences of the diverse constituents in the digital health ecosystem is important.

          Methods

          A digital health stakeholder workshop was held in Canberra, Australia, to address two key questions: 1) What is currently working and not working in digital health? and 2) Where should digital health go in the future? As part of a living lab approach, the 25 workshop participants from research, industry, patient and other healthcare consumer groups and government, engaged in participatory design activities directed at stimulating ideas and discussion. The design artefacts and videos generated during the workshop were thematically analysed.

          Results

          Digital health technologies offer valuable ways for healthcare consumers, providers, community groups and health industries to create and share information about health, medicine and healthcare. However, members of some social groups are currently excluded from full participation in the digital health ecosystem. Mechanisms for facilitating further consultation between the various stakeholders involved in digital health, including patients and carers, need to be established. The rights and responsibilities of the different stakeholders involved in connected digital health also need to be better identified and highlighted. At the same time, personal data privacy and security need protection.

          Conclusion

          Establishing the effective and responsible delivery of digital health technologies and collection, protection and sharing of health data is highly complex. Infrastructure, ethical and social issues need to be considered.

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          Most cited references18

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          The literacy divide: health literacy and the use of an internet-based patient portal in an integrated health system-results from the diabetes study of northern California (DISTANCE).

          Internet-based patient portals are intended to improve access and quality, and will play an increasingly important role in health care, especially for diabetes and other chronic diseases. Diabetes patients with limited health literacy have worse health outcomes, and limited health literacy may be a barrier to effectively utilizing internet-based health access services. We investigated use of an internet-based patient portal among a well characterized population of adults with diabetes. We estimated health literacy using three validated self-report items. We explored the independent association between health literacy and use of the internet-based patient portal, adjusted for age, gender, race/ethnicity, educational attainment, and income. Among 14,102 participants (28% non-Hispanic White, 14% Latino, 21% African-American, 9% Asian, 12% Filipino, and 17% multiracial or other ethnicity), 6099 (62%) reported some limitation in health literacy, and 5671 (40%) respondents completed registration for the patient portal registration. In adjusted analyses, those with limited health literacy had higher odds of never signing on to the patient portal (OR 1.7, 1.4 to 1.9) compared with those who did not report any health literacy limitation. Even among those with internet access, the relationship between health literacy and patient portal use persisted (OR 1.4, 95% CI 1.2 to 1.8). Diabetes patients reporting limited health literacy were less likely to both access and navigate an internet-based patient portal than those with adequate health literacy. Although the internet has potential to greatly expand the capacity and reach of health care systems, current use patterns suggest that, in the absence of participatory design efforts involving those with limited health literacy, those most at risk for poor diabetes health outcomes will fall further behind if health systems increasingly rely on internet-based services.
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            Are People With Chronic Diseases Interested in Using Telehealth? A Cross-Sectional Postal Survey

            Background There is growing interest in telehealth—the use of technology to support the remote delivery of health care and promote self-management—as a potential alternative to face-to-face care for patients with chronic diseases. However, little is known about what precipitates interest in the use of telehealth among these patients. Objective This survey forms part of a research program to develop and evaluate a telehealth intervention for patients with two exemplar chronic diseases: depression and raised cardiovascular disease (CVD) risk. The survey was designed to explore the key factors that influence interest in using telehealth in these patient groups. Methods Thirty-four general practices were recruited from two different regions within England. Practice records were searched for patients with (1) depression (aged 18+ years) or (2) 10-year risk of CVD ≥20% and at least one modifiable risk factor (aged 40-74 years). Within each general practice, 54 patients in each chronic disease group were randomly selected to receive a postal questionnaire. Questions assessed five key constructs: sociodemographics, health needs, difficulties accessing health care, technology-related factors (availability, confidence using technology, perceived benefits and drawbacks of telehealth), and satisfaction with prior use of telehealth. Respondents also rated their interest in using different technologies for telehealth (phone, email and Internet, or social media). Relationships between the key constructs and interest in using the three mediums of telehealth were examined using multivariable regression models. Results Of the 3329 patients who were sent a study questionnaire, 44.40% completed it (872/1740, 50.11% CVD risk; 606/1589, 38.14% depression). Overall, there was moderate interest in using phone-based (854/1423, 60.01%) and email/Internet-based (816/1425, 57.26%) telehealth, but very little interest in social media (243/1430, 16.99%). After adjusting for health needs, access difficulties, technology-related factors, and prior use of telehealth, interest in telehealth had largely no association with sociodemographic variables. For both patient groups and for each of the three technology mediums, the most important constructs related to interest in telehealth were having the confidence to use the associated technology, as well as perceiving greater advantages and fewer disadvantages from using telehealth. To illustrate, greater confidence using phone technologies (b=.16, 95% CI 0.002-0.33), while also perceiving more benefits (b=.31, 95% CI 0.21-0.40) and fewer drawbacks (b=-.23, 95% CI -0.28 to -0.17) to using telehealth were associated with more interest in using phone-based telehealth technologies for patients with depression. Conclusions There is widespread interest in using phone-based and email/Internet-based telehealth among patients with chronic diseases, regardless of their health status, access difficulties, age, or many other sociodemographic factors. This interest could be increased by helping patients gain confidence using technologies and through highlighting benefits and addressing concerns about telehealth. While the same pattern exists for social media telehealth, interest in using these technologies is minimal.
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              Rethinking Design Thinking: Part I

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                Author and article information

                Journal
                Digit Health
                Digit Health
                DHJ
                spdhj
                Digital health
                SAGE Publications (Sage UK: London, England )
                2055-2076
                09 November 2017
                Jan-Dec 2017
                : 3
                : 2055207617740018
                Affiliations
                [1-2055207617740018]Smart Technology Living Lab and News and Media Research Centre, University of Canberra, Australia
                Author notes
                [*]Deborah Lupton, University of Canberra, Building 9, Bruce 2604, Canberra, Australia. Email: deborah.lupton@ 123456canberra.edu.au Twitter: @DALupton
                Author information
                http://orcid.org/0000-0003-2658-4430
                Article
                10.1177_2055207617740018
                10.1177/2055207617740018
                6001191
                29942616
                f2989225-7e09-4104-845f-4111f3764412
                © The Author(s) 2017

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) 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 pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 12 July 2017
                : 6 October 2017
                Categories
                Original Research
                Custom metadata
                January-December 2017

                design research,design sociology,digital health,health data,living lab,participatory design,stakeholders

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