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Contents

General Resources

Alexander, A. 2019. Is Your Sleep Apnea Machine Snitching to Your Insurer? Bloomberg Law. Available online at https://news.bloomberglaw.com/health-law-and-business/is-your-sleep-apnea-machine-snitching-to-your-insurer.

Allen, M. 2018. You Snooze, You Lose: How Insurers Dodge The Costs Of Popular Sleep Apnea Devices. NPR. Available online at https://www.npr.org/sections/health-shots/2018/11/21/669751038/you-snooze-you-lose-how-insurers-dodge-the-costs-of-popular-sleep-apnea-devices.

AMIA. 2019. Comments on the 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program. May 23. [View PDF]

AMIA. 2018. Redefining Our Picture of Health: Towards a Person-Centered Integrated Care, Research, Wellness, and Community Ecosystem (A White Paper of the 2017 AMIA Policy Invitational). https://www.amia.org/public-policy/redefining-our-picture-health. [View PDF]

Bradford B, Grisel F, Meares T, et al. 2019 "Report Of The Facebook Data Transparency Advisory Group," April. The Justice Collaboratory, Yale Law School. [View PDF]

Butler M. 2018. Patients Frequently Unaware that Many Medical Devices Gather, Share Data. Journal of AHIMA. Available online at https://journal.ahima.org/2018/12/05/patients-frequently-unaware-that-many-medical-devices-gather-share-data/.

Kim K., et al. 2016. "Coordination at the Point of Need," chapter 5 in B. Hesse, D. Ahern & E. Beckjord: Oncology Informatics.  DOI: http://dx.doi.org/10.1016/B978-0-12-802115-6.00005-7. [View PDF]

Landi H. 2019. "AMIA says ONC rule doesn't go far enough on patients' data access." FierceHealthCare, May 24. Available on line at https://www.fiercehealthcare.com/tech/amia-urges-federal-policymakers-to-flip-paradigm-data-access.

May, Carl. 2019. Normalization process theory - understanding implementation dynamics. Available online at https://www.carlrmay.com/understanding-implementation-dynamics.html.

Miner L. 2019. "For a Longer, Healthier Life, Share Your Data" [Opinion]. The New York Times, May 22. Available online at https://www.nytimes.com/2019/05/22/opinion/health-care-privacy-hipaa.html.

National eHealth Collaborative (NeHC). 2013. "Patient Generated Health Information Technical Expert Panel FINAL REPORT." [View PDF; View Appendix PDF]

Normalization Process Theory Toolkit. Available online at http://normalizationprocess.org/npt-toolkit/.

Okun S. 2019. The missing reality of real life in real-world evidence. Clinical Pharmacology & Therapeutics [accepted article]. Available online at https://ascpt.onlinelibrary.wiley.com/doi/epdf/10.1002/cpt.1465.

Perakslis E, Coravos A. 2019. Is health-care data the new blood? The Lancet Digital Health 1(1):e8-e9. https://doi.org/10.1016/S2589-7500(19)30001-9. [View PDF]

Raile A, Raile E, Post L. 2017. Guide to Generating Political Will and Public Will: PPW Toolkit. https://blogs.worldbank.org/publicsphere/files/ppw_toolkit_0.pdf [View PDF]

Shared Decision Making Project at the University of Washington. Available online at http://depts.washington.edu/shareddm/waleg.

1:  Evidence for Shared Decision-Making


Edmunds M.  2019.  Promoting consumer engagement in health and health care.  Chapter 1.  In Edmunds M, Hass C, Holve E. (Eds.).  Consumer Informatics and Digital Health:  Solutions for Health and Health Care.  Springer, 2019. [View PDF]

Frank L, Forsythe , Ellis L, Schrandt S, Sheridan S, Gerson J, Knopka K, Daughterty S.  2015.  Conceptual and practical foundations of patient engagement in research at the Patient-centered Outcomes Research Institute.  Quality of Life Research 24(5):1033-1041. [View PDF]

Gordon W, Chopra A, Landman A.  2018. Patient-led data sharing – a new paradigm for electronic health data.  NEJM Catalyst November 21. [View PDF]

Kim KK, Khodyakov D, Marie K, Taras H, Meecker D, Campos, Ohno-Machado.  2018.  A novel stakeholder engagement approach for patient-centered outcomes research.  Medical Care 56(10):Suppl1, S41-S47. [View PDF]

Lavallee DC, Chenok KE, Love RM, Petersen C, Holve E, Segal CD, Franklin PD.  2016. Incorporating patient-reported outcomes into health care to engage patients and enhance care.  Health Affairs 35(4):575-582. [View PDF]

2:  Tools for Shared Decision-Making

Bishop M.  Healthcare social media for consumer informatics.  Chapter 4 In Edmunds M, Hass C, Holve E. (Eds.).  Consumer Informatics and Digital Health:  Solutions for Health and Health Care.  Springer, 2019. [View PDF]

Kim K, Jalil S, Ngo  V.  2019. Improving self-management and care coordination with person-generated health data and mobile health.   Chapter 12 In Edmunds M, Hass C, Holve E. (Eds.).  Consumer Informatics and Digital Health:  Solutions for Health and Health Care.  Springer. [View PDF]

Lor M, Koleck T, Bakken S.  2019. Information visualizations of symptom information for patients and providers: a systematic review, JAMIA 26(2): 162–171. https://doi.org/10.1093/jamia/ocy152. [View PDF]

Marien S, Legrand D, Ramdoya R, Nsenga J, Ospina G, Ramon V, Boland B, Spinewine A.  2018.  A web application to involve patients in the medication reconciliation process:  a user-centered usability and usefulness study.  JAMIA 25(11):1488-1500. https://doi.org/10.1093/jamia/ocy107. [View PDF]

Ohno-Machado L.  2018.  Clinical informatics applications of medication reconciliation, decision support systems, and online portal patient-provider communications.  JAMIA 25(11):1431. https://doi.org/10.1093/jamia/ocy150. [View PDF]

ResearchKit.  http://researchkit.org

Singh K, Meyer SR, Westfall JM.  2018.  Consumer-facing data, information, and tools:  self-management of health in the digital age.  Health Affairs 38(3):352-358. [View PDF]

Tai-Seale M, Downing NL, Jones VG, Milani RV, Zhao B, Clay B, Sharp DC, Chan AS, Longhurst, CA.  2019. Technology-enabled consumer engagement:  promising practices at four health care delivery organizations.  Health Affairs 38(3):383-390. [View PDF]

Tuckson R, Edmunds M, Hodgkins ML.  2017. Telehealth.  The New England Journal of Medicine 377(16):1585-1592. [View PDF]

3:  Policy Change

AMIA, Petersen C, Berner ES, Embi PJ, et al.  AMIA’s code of professional and ethical conduct 2018. [View PDF]

Davis J.  2019.  HIPAA needs clarity around patient data sharing, AMIA, AHIMA say.  https://healthitsecurity.com/news/hipaa-needs-clarity-around-patient-data-sharing-amia-ahima-say. [View PDF]

HHS.gov.  HHS announces next steps in advancing interoperability of health information.  April 19, 2019.  https://www.hhs.gov/about/news/2019/04/19/hhs-announces-next-steps-in-advancing-interoperability-of-health-information.html. [View PDF]

Landi H.  FierceHealthCare.com.  2019.  Complaint to FTC accuses Facebook of exposing sensitive health data in groups.  https://www.fiercehealthcare.com/tech/ftc-complaint-accuses-facebook-exposing-sensitive-health-data-groups. [View PDF]

OpenNotes Comments on HHS Rule to Improve Patient Access and Interoperability.  April 12, 2019.  https://www.opennotes.org/opennotes-comments-on-hhs-rule-to-improve-patient-access-and-interoperability/. [View PDF]

Petersen, C. Patient informaticians: Turning patient voice into patient action. JAMIA Open, 0(0), 2018, 1–6. http://dx.doi.org/10.1093/jamiaopen/ooy014. [View PDF]

Petersen, C. Through Patients’ Eyes: Regulation, Technology, Privacy, and the Future. Yearb Med Inform 2018. http://dx.doi.org/10.1055/s-0038-1641193. [View PDF]

WIlbanks J.  Ethical issues for consumer informatics and online content.  Chapter 17. In Edmunds M, Hass C, Holve E. (Eds.).  Consumer Informatics and Digital Health:  Solutions for Health and Health Care.  Springer, 2019. [View PDF]

Zieger A.  Health orgs were in talks to collect SDOH data from Facebook.  https://www.healthcareittoday.com/2018/04/09/health-orgs-were-in-talks-to-collect-sdoh-data-from-facebook/.

4:  Culture Change

Adler-Milstein J, Sinaiko AD.  2019.  Will patients be better consumers when they can access their health data?  Health Affairs Blog.  https://www.healthaffairs.org/do/10.1377/hblog20190307.661798/full/. [View PDF]

Copeland RL, Wong WF, Jones J, Edmunds M.  2019. Using information technology at Kaiser Permanente in support of health equity. Chapter 3 In Edmunds M, Hass C, Holve E. (Eds.).  Consumer Informatics and Digital Health:  Solutions for Health and Health Care.  Springer. [View PDF]

Cordina J,  Qian M, Sanfilippo.  April 2019.  Healthcare consumerism today:  Accelerating the consumer experience.  McKinsey & Company. https://www.mckinsey.com/industries/healthcare-systems-and-services/our-insights/healthcare-consumerism-today-accelerating-the-consumer-experience. [View PDF]

Families USA. 2018. A national priority agenda to advance health equity through system transformation.  https://familiesusa.org/Health-Equity-Priorities-Report. [View PDF]

Nelson B.  March 18, 2019.  Taking the lead:  a new breed of cancer advocate is reshaping the future of cancer research.  https://www.cancerhealth.com/article/taking-lead-patient-advocacy. [View PDF]

Thornton J.  March 29, 2019.  When patients innovate.  BMJ 364:1474. Doi10.1136/bmj.l1474.  https://www.bmj.com/content/364/bmj.l1474. [View PDF]

Volpp KG, Mohta NS.  January 4, 2018.  Patient engagement survey:  social networks to improve patient health.  NEJM Catalyst Insights Report.  https://catalyst.nejm.org/survey-social-networks-patient-health/. [View PDF]

National eHealth Collaborative. December 2013. Patient Generated Health Information Technical Expert Panel Final Report. https://www.healthit.gov/sites/default/files/pghi_tep_finalreport121713.pdf [View PDF]

National eHealth Collaborative. December 2013. Patient Generated Health Information Technical Expert Panel Final Report APPENDIX. [View PDF]

5:  Related Figures & Graphics

  1. The Chronic Care Model 
  2. eGEMs Commentary Graphic
  3. Patient/Medical Team Data Funnel
  4. Families USA: Six Domains for Advancing Health Equity
  5. Data Risk Continuum (See here for an example of how it could be formatted)
  6. Will, Skill & Dollar Bill graphics (2 versions) 
  7. Shared Decision Making 

6:  Links to Workshop Notes for Each Paper Topic