Consumer Health Informatics: Past, Present, and Future of a Rapidly Evolving Domain

Keywords

Consumer health - home telehealth - personal health record - patient empowerment

 

• References

• 1 Ferguson T. Doctom’s FAQ. [cited 2015 November 1]. Available from: www.fergusonreport.com/articles/tfr07-03.htm
• 2 Ferguson T. What is consumer health informatics?. In: Ferguson T. ed. The Ferguson Report. Austin; 2001
• 3 Guinta MA, Allegrante JP. The President’s Committee on Health Education: a 20-year retrospective on its politics and policy impact. Am J Public Health 1992; 82 (Suppl. 07) 1033-41.
• 4 Entwistle VA, Sheldon TA, Sowden AJ, Watt IS. Supporting consumer involvement in decision making: what constitutes quality in consumer health information?. Int J Qual Health Care 1996; 8 (Suppl. 05) 425-37.
• 5 Liu D, Lu CJ. Visibility and findability of the nursing home compare website. Soc Work Public Health 2015; 30 (Suppl. 02) 144-56.
• 6 Staccini P, Fernandez-Luque L. Health Social Media and Patient-Centered Care: Buzz or Evidence? Findings from the Section “Education and Consumer Health Informatics” of the 2015 Edition of the IMIA Yearbook. Yearb Med Inform 2015; 10 (Suppl. 01) 160-3.
• 7 Servick K. Can 23andMe have it all?. Science 2015; 349 6255 1472-4 1476-7.
• 8 Hall AK, Bernhardt JM, Dodd V, Vollrath MW. The digital health divide: evaluating online health information access and use among older adults. Health Educ Behav 2015; 42 (Suppl. 02) 202-9.
• 9 Flaherty D, Hoffman-Goetz L, Arocha JF. What is consumer health informatics? A systematic review of published definitions. Inform Health Soc Care 2015; 40 (Suppl. 02) 91-112.
• 10 Gibbons MC, Wilson RF, Samal L, Lehmann CU, Dickersin K, Lehmann HP. et al. Consumer health informatics: results of a systematic evidence review and evidence based recommendations. Transl Behav Med 2009; 1: 72-82.
• 11 Gustafson DH, Hawkins R, Pingree S, McTavish F, Arora NK, Mendenhall J. et al. Effect of computer support on younger women with breast cancer. J Gen Intern Med 2001; 16: 435-45.
• 12 Gustafson DH, Hawkins R, Mctavish F, Pingree S, Chen WC, Volrathongchai K. et al. Internet-based interactive support for cancer patients: are integrated systems better?. J Commun 2008; 58: 238-57.
• 13 Demiris G, Afrin LB, Speedie S, Courtney KL, Sondhi M, Vimarlund V. et al. Patient-centered applications: use of information technology to promote disease management and wellness. A white paper by the AMIA knowledge in motion working group. J Am Med Inform Assoc 2008; 15 (Suppl. 01) 8-13.
• 14 Gibbons MC, Wilson RF, Samal L, Lehmann CU, Dickersin K, Lehmann HP. et al. Consumer health informatics: results of a systematic evidence review and evidence based recommendations. Transl Behav Med 2011; 1 (Suppl. 01) 72-82.
• 15 Shea S, Weinstock RS, Teresi JA, Palmas W, Starren J, Cimino JJ. e al IDEATel Consortium. A randomized trial comparing telemedicine case management with usual care in older, ethnically diverse, medically underserved patients with diabetes mellitus: 5 year results of the IDEATel study. J Am Med Inform Assoc 2009; 16 (Suppl. 04) 446-56.
• 16 Pinnock H, Hanley J, McCloughan L, Todd A, Krishan A, Lewis S. et al. Effectiveness of telemonitoring integrated into existing clinical services on hospital admission for exacerbation of chronic obstructive pulmonary disease: researcher blind, multicentre, randomised controlled trial. BMJ 2013; 347: f6070.
• 17 Takahashi PY, Hanson GJ, Pecina JL, Stroebel RJ, Chaudhry R, Shah ND. et al. A randomized controlled trial of telemonitoring in older adults with multiple chronic conditions: the Tele-ERA study. BMC Health Services Research 2010; 10: 255.
• 18 Wootton R. Twenty years of telemedicine in chronic disease management—an evidence synthesis. J Telemed Telecare 2012; 18 (Suppl. 04) 211-20.
• 19 Reeder B, Meyer E, Lazar A, Chaudhuri S, Thompson HJ, Demiris G. Framing the evidence for health smart homes and home-based consumer health technologies as a public health intervention for independent aging: a systematic review. Int J Med Inform 2013; 82 (Suppl. 07) 565-79.
• 20 Demiris G, Thompson HJ. Mobilizing Older Adults: Harnessing the Potential of Smart Home Technologies. Contribution of the IMIA Working Group on Smart Homes and Ambient Assisted Living. Yearb Med Inform 2012; 7: 94-9.
• 21 Connecting for Health; A Public-Private Collaborative.. The Personal Health Working Group: Final Report. Markle Foundation; 2003
• 22 Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: a scoping review. J Am Med Inform Assoc 2011; 18 (Suppl. 04) 515-22.
• 23 Halamka JD, Mandl KD, Tang PC. Early experiences with personal health records. J Am Med Inform Assoc 2008; 15 (Suppl. 01) 1-7.
• 24 Jhamb M, Cavanaugh KL, Bian A, Chen G, Ikizler TA, Unruh ML. et al. Disparities in Electronic Health Record Patient Portal Use in Nephrology Clinics. Clin J Am Soc Nephrol [Epub ahead of print]
• 25 Leveille SG, Walker J, Ralston JD, Ross SE, Elmore JG, Delbanco T. Evaluating the impact of patients’ online access to doctors’ visit notes: designing and executing the OpenNotes project. BMC Med Inform Decis Mak 2012; 12: 32.
• 26 Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N. et al. Inviting patients to read their doctors’ notes: A quasi-experimental study and a look ahead. Ann Intern Med 2012; 157: 461-70.
• 27 Walker J, Meltsner M, Delbanco T. US experience with doctors and patients sharing clinical notes. BMJ 2015; 350: g7785.
• 28 Global Mobile Health Trends and Figures Market Report 2013-2017. http://research2guidance.com/2010/11/10/500m-people-will-be-using-healthcare-mobile-applications-in-2015-2/
• 29 Appelboom G, LoPresti M, Reginster JY, Sander Connolly E, Dumont EP. The quantified patient: a patient participatory culture. Curr Med Res Opin 2014; 30 (Suppl. 12) 2585-7.
• 30 Prainsack B, Reardon J, Hindmarsh R, Gottweis H, Lunshof JE. Misdirected precaution?. Nature 2008; 456: 34-5.
• 31 Kalokairinou M, Howard HC, Borry P. Changes on the horizon for consumer genomics in the EU. Science 2014; 346 6207 296-8.
• 32 Saukko PM, Reed M, Britten N, Hogarth S. Negotiating the boundary between medicine and consumer culture: online marketing of nutrigenetic tests. Soc Sci Med 2010; 70 (Suppl. 05) 744-53.
• 33 Delnoij D, Sauter W. Patient information under the EU patients’ rights Directive. Eur J Public Health 2011; 21 (Suppl. 03) 271-2.
• 34 Health Policy Brief: public reporting on quality and costs. Health Affairs; March 8 2012
• 35 Huckman RS, Kelley MA. Public Reporting, Consumerism, and Patient Empowerment. The New Engl J Med 2013; 369 (Suppl. 20) 1875-7.
• 36 Collins FS, Varmus H. A new initiative on precision medicine. N Engl J Med 2015; 372 (Suppl. 09) 793-5.
• 37 Cohen B, Kietzmann J. Ride On! Mobility Business Models for the Sharing Economy. Organization & Environment 2014; 27 (Suppl. 03) 279-96.
• 38 Meyer GS, Gibbon RV. House Calls to the Elder-ly—A Vanishing Practice Among Physicians. New Engl J Med 1997; 337: 1815-20.
• 39 CrowdMed. [cited November 1, 2015]. Available from: https://www.crowdmed.com/our-inspiration
• 40 Wall Street Journal: Photo Sharing Without Lol-Cats: Figure1 raises 1M to become Medicine’s Instagram. [cited November 1, 2015] Available from: http://blogs.wsj.com/venturecapital/2014/08/06/photo-sharing-without-lolcats-figure-1-raises-4m-to-become-medicines-instagram/
• 41 Kaplan B. Selling health data: de-identification, privacy, and speech. Camb Q Healthc Ethics 2015; 24 (Suppl. 03) 256-71.
• 42 Brennan PF, Downs S, Casper G. Project Health-Design: rethinking the power and potential of personal health records. J Biomed Inform 2010; 43 (Suppl. 05) S3-5.
• 43 Derse AR, Miller TE. Net effect: professional and ethical challenges of medicine online. Camb Q Healthc Ethics 2008; Fall 17 (Suppl. 04) 453-64.
• 44 Miller TE, Horowitz CR. Disclosing doctors’ incentives: will consumers understand and value the information?. Health Aff (Millwood) 2000; 19 (Suppl. 04) 149-55.
• 45 Wetter T. Consumer Health Informatics. New Services, Roles, and Responsibilities. London: Springer; 2015