Yearbook of Medical Informatics, Table of Contents Yearb Med Inform 2014; 23(01): 170-176DOI: 10.15265/IY-2014-0017 Original Article Georg Thieme Verlag KG StuttgartTransforming Health Care Delivery Through Consumer Engagement, Health Data Transparency, and Patient-Generated Health Information Authors Author Affiliations D. Z. Sands 1 Beth Israel Deaconess Medical Center, Boston, MA, USA 2 Society for Participatory Medicine, Boston, MA, USA 3 RTI International, Waltham, MA, USA J. S. Wald 2 Society for Participatory Medicine, Boston, MA, USA 4 Harvard Medical School, Boston, MA, USA 3 RTI International, Waltham, MA, USA Recommend Article Abstract Full Text PDF Download(opens in new window) Keywords KeywordsChronic disease - consumer participation - delivery of health care - electronic health records - informatics References References 1 Blumenthal D. Wiring the health system—origins and provisions of a new federal program.. N Engl J Med 2011; 365 (24) 2323-9. 2 Pozin I. Industry to watch in 2014: Healthcare tech.. 2013 Available at:. http://www.forbes.com/sites/ilyapozin/2013/10/17/industry-to-watch-in-2014-healthcare-tech/ 3 Hillestad R, Bigelow J, Bower A, Girosi F, Meili R, Scoville R. et al. Can electronic medical record systems transform health care? Potential health benefits, savings, and costs.. Health Aff (Millwood) 2005; 24 (05) 1103-17. 4 Jha AK, Doolan D, Grandt D, Scott T, Bates DW. The use of health information technology in seven nations.. Int J Med Inf 2008; 77 (12) 848-54. 5 Blumenthal D, Tavenner M. The “meaningful use” regulation for electronic health records.. N Engl J Med 2010; 363 (06) 501-4. 6 Darmon D, Sauvant R, Staccini P, Letrilliart L. Which functionalities are available in the electronic health record systems used by french general practitioners? An assessment study of 15 systems.. Int J Med Inf 2014; 83 (01) 37-46. 7 Blumenthal D. Implementation of the federal health information technology initiative.. N Engl J Med 2011; 365 (25) 2426-31. 8 HHS.. Doctors and hospitals’ use of health it more than doubles since 2012.. 2013 Available at: http://www.hhs.gov/news/press/2013pres/05/20130522a.html. Accessed January 9. 9 Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: Definitions, benefits, and strategies for overcoming barriers to adoption.. J Am Med Inform Assoc 2006; 13 (02) 121-6. 10 Palen TE, Ross C, Powers JD, Xu S. Association of online patient access to clinicians and medical records with use of clinical servicesonline patient access and use of clinical services.. JAMA 2012 308(19). 11 Goldzweig CL, Orshansky G, Paige NM, Towfigh AA, Haggstrom DA, Miake-Lye I. et al. Electronic patient portals: Evidence on health outcomes, satisfaction, efficiency, and attitudes.. Ann Intern Med 2013 159(10). 12 Wagner PJ, Dias J, Howard S, Kintziger KW, Hudson MF, Seol YH. et al. Personal health records and hypertension control: A randomized trial.. J Am Med Inform Assoc 2012; 19 (04) 626-34. 13 Stellefson M, Dipnarine K, Stopka C. The chronic care model and diabetes management in us primary care settings: A systematic review.. Preventing chronic disease 2013; Feb 10: E26. PMID: 23428085. 14 CMS.. Eligible professional’s guide to stage 2 of the ehr incentive programs.. 2013 Available at: http://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Downloads/Stage2_Guide_EPs_9_23_13.pdf. Accessed January 9. 15 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 (07) 461-70. 16 Woods SS, Schwartz E, Tuepker A, Press NA, Nazi KM, Turvey CL. et al. Patient experiences with full electronic access to health records and clinical notes through the my healthevet personal health record pilot: Qualitative study.. J Med Internet Rese 2013 15(3). 17 OpenNotes.. Myopennotes website.. 2013 Available at: http://www.myopennotes.org. Accessed January 9. 18 CVS minute clinic.. Available at: http://www.minuteclinic.com. 19 Walgreens healthcare clinic.. Available at: http://www.walgreens.com/topic/pharmacy/healthcare-clinic.jsp. 20 American Well.. Available at: http://www.americanwell.com. 21 Quinn CC, Shardell MD, Terrin ML. et al. Cluster-randomized trial of a mobile phone personalized behavioral intervention for blood glucose control.. Diabetes Care 2011; 34 (09) 1934-42. 22 Paré G, Moqadem K, Pineau G, St-Hilaire C. Clinical effects of home telemonitoring in the context of diabetes, asthma, heart failure and hypertension: A systematic review.. J Med Internet Res 2010 12(2). 23 Darkins A, Ryan P, Kobb R, Foster L, Edmonson E, Wakefield B. et al. Care coordination/ home telehealth: The systematic implementation of health informatics, home telehealth, and disease management to support the care of veteran patients with chronic conditions.. Telemed J E Health 2008; 14 (10) 1118-26. 24 Shea S, Weinstock RS, Teresi JA, Palmas W, Starren J, Cimino JJ. et al. 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 (04) 446-56. 25 Pandor A, Gomersall T, Stevens JW, Wang J, Al-Mohammad A, Bakhai A. et al. Remote monitoring after recent hospital discharge in patients with heart failure: A systematic review and network meta-analysis.. Heart 2013; Dec 99 (23) 1717-26. 26 Anon.. Consumer electronics industry revenues to reach record-high $209 billion in 2013, according to cea.. 2013 Available at: http://www.ce.org/News/News-Releases/Press-Releases/2013-Press-Releases/CE-Industry-Revenues-to-Reach-Record-High-$209-Bil.aspx. Accessed January 9. 27 Evans B. What does mobile scale mean?. (weblog).: 2013. Available at: http://ben-evans.com/benedictevans/2013/12/18/what-does-mobile-scale-mean. Accessed January 9. 28 Cisco.. White paper: Visual networking index: Global mobile data traffic forecast update, 2012–2017.. 2013 Available at: http://www.cisco.com/c/en/us/solutions/collateral/service-provider/visual-networking-index-vni/white_paper_c11-520862.html 29 Fox S, Duggan M. Mobile health 2012.. Pew Internet and American Life Project 2012 8. 30 Edison Arbitron Research.. The infinite dial 2013: Navigating digital platforms.. 2013 Available at: http://www.edisonresearch.com/wp-content/uploads/2013/04/Edison_Research_Arbitron_Infinite_Dial_2013.pdf. 31 Google.. The new multi-screen world.. 2012 Available at: http://www.google.com/think/research-studies/the-new-multi-screen-world-study.html. Accessed January 9. 32 Anon.. The social habit.. Edison/Arbitron Internet and Multimedia Research Series; 2012 33 Facebook.. Investor relations quarterly financial report jan-mar 2014.. 2014 Available at: http://investor.fb.com/releasedetail.cfm?ReleaseID=842071. 34 IDC research report - Always connected: How smartphones and social keep us engaged;. 2013 35 Moorhead SA, Hazlett DE, Harrison L, Carroll JK, Irwin A, Hoving C. A new dimension of health care: Systematic review of the uses, benefits, and limitations of social media for health communication.. J Med Internet Res 2013 15(4). 36 Jacobsen LA, Kent M, Lee M, Mather M. America’s aging population: Population Reference Bureau; 2011.. Available at: http://www.prb.org/pdf11/aging-in-america.pdf 37 Vincent GK, Velkoff VA. The next four decades: The older population in the united states: 2010 to 2050: US Department of Commerce,. Economics and Statistics Administration,; US Census Bureau;: 2010 38 Dall TM, Gallo PD, Chakrabarti R, West T, Semilla AP, Storm MV. An aging population and growing disease burden will require alarge and specialized health care workforce by 2025.. Health Aff; (Millwood): 2013. 32(11). 39 Fox S, Duggan M. The diagnosis difference.. Pew Internet and American Life Project. 2013 Available at:. http://www.pewinternet.org/2013/11/26/the-diagnosis-difference/ 40 Fox S, Duggan M. Tracking for health.. Washington, DC:: Pew Internet & American Life Project,. January http://wwwpewinternetorg/Reports/2013/Tracking-for-Health aspx 2013 41 Shapiro M, Johnston D, Wald J, Mon D. Patient-generated health data.. Office of the National Coordinator for Health Information Technology. Research Triangle Park, NC: RTI International; 2012 42 Berry K. Final report of the technical expert panel on patient-generated health information;. 2013 43 O’Kane M, Buto K, Alteras T, Baicker K, Fifield J, Griffin R. et al. Demanding value from our health care: Motivating patient action to reduce waste in health care.. 2012 44 Kivits J. Researching the’informed patient.. Information, Communication & Society 2004; 7 (04) 510-30. 45 Clancy CM. Patient engagement in health care.. Health Serv Res 2011; 46 (02) 389-93. 46 Wagner EH. Chronic disease management: What will it take to improve care for chronic illness?. Eff Clin Pract 1998; Aug-Sep 1 (01) 2-4. PMID: 10345255. 47 Oldenburg J. Engage! Transforming healthcare through digital patient engagement.. Chicago, IL: Health Information Management Systems Society (HIMSS); 2013 48 Pham HH, Schrag D, O’Malley AS. et al. Care patterns in medicare and their implications for pay for performance.. N Engl J Med 2007; 356 (11) 1130-9. 49 Ferguson T. Consumer health informatics.. Healthc Forum J 1995 1995 38(1). 50 Brennan P, Swanberg W. Listening in the moment.. interactions 2013; 20 (05) 22-5. 51 Ford ES, Bergmann MM, Kroger J, Schienkiewitz A, Weikert C, Boeing H. Healthy living is the best revenge: Findings from the european prospective investigation into cancer and nutrition-potsdam study.. Arch Intern Med 2009; 169 (15) 1355. 52 Unruh KT, Pratt W. The invisible work of being a patient and implications for health care:“[the doctor is] my business partner in the most important business in my life, staying alive”.. Ethnographic Praxis in Industry Conference Proceedings; 2008: Wiley Online Library;; 2008. p. 40-50. 53 Pickering TG, James GD, Boddie C, Harshfield GA, Blank S, Laragh JH. How common is white coat hypertension?. JAMA 1988; 259 (02) 225-8. 54 Ohkubo T, Kikuya M, Metoki H, Asayama K, Obara T, Hashimoto J. et al. Prognosis of “masked” hypertension and “white-coat” hypertension detected by 24-h ambulatory blood pressure monitoring10-year follow-up from the ohasama study.. J Am Coll Cardiol 2005; 46 (03) 508-15. 55 Nelson EC, Hvitfeldt HF, Reid R, Grossman D, Lindblad S, Mastanduno MP. et al. Using patient-reported information to improve health outcomes and health care value: Case studies from dartmouth, karolinska and group health: Technical Report.. The Dartmouth Institute for Health Policy and Clinical Practice;; 2012 56 Rittenhouse DR, Shortell SM. The patient-centered medical home.. JAMA 2009; 301 (19) 2038-40. 57 Friedberg MW, Van Busum K, Wexler R, Bowen M, Schneider EC. A demonstration of shared decision making in primary care highlights barriers to adoption and potential remedies.. Health Aff (Millwood) 2013; 32 (02) 268-75. 58 Delbanco T, Berwick DM, Boufford JI, Edgman-Levitan S, Ollenschläger G, Plamping D. et al. Healthcare in a land called peoplepower: Nothing about me without me.. Health Expect 2001; 4 (03) 144-50. 59 IHTSDO.. Snomed ct.. Available at: http://www.ihtsdo.org/snomed-ct/. 60 LOINC.. Loinc website.. Available at: http://loinc.org/. 61 AMA.. Cpt codes.. Available at: http://www.ama-assn.org/ama/pub/physician-resources/solutions-managing-your-practice/coding-billing-insurance/cpt.page 62 UMLS.. Nddf.. Available at: http://www.nlm.nih.gov/research/umls/sourcereleasedocs/current/NDDF/. 63 CDC.. Clinical document architecture.. Available at: http://www.cdc.gov/nhsn/CDA/index.html. 64 Coiera E. Stasis and adaptation.. Stud Health Technol Inform 2012; 194: 11-9. 65 Zeng QZ. Consumer health vocabulary initiative.. 2013 Available at: http://consumerhealthvocab.org/index.html?http%3A//consumerhealthvocab.org/bibliography.html. Accessed 04/27/2014. 66 Coiera E. Four rules for the reinvention of health care.. BMJ 2004; 328 7449 1197.
