DYING, SURVIVING, OR AGING WITH GRACE


Not necessarily in that order
Resources on illness, death and dying, loss, grief, and positive aging

Selected Works

Enjoying the golden years
Autism, Asperger's syndrome, Savant Syndrome
Depression, bipolar disorder (manic-depressive illness), schizophrenia, and other forms of mental illness
Including suicide and assisted dying
Plus memorials and requiems
Plus cemeteries, coffins, headstones, memorials, etc.
(stories about specific diseases, conditions, syndromes)
Narrative medicine (or medical narrative) Memoirs of illness, crisis, disability, differentness, and survival
Assisted living, nursing homes, cohousing, or living in place (with or without caregivers)
What's wrong with American health care? Understanding the issues reform must address

HIPAA, electronic health records, and patient privacy


The Health Insurance Portability and
Accountability Act of 1996 (HIPAA)


The Health Insurance Portability and Accountability Act of 1996 (HIPAA), Public Law 104-191, was enacted on August 21, 1996. Sections 261 through 264 of HIPAA require the Secretary of HHS to publicize standards for the electronic exchange, privacy and security of health information.
Summary of the HIPAA Privacy Rule (PDF, Health & Human Services)
HIPAA experts: No need to request a waiver after Orlando shooting (Joseph Burns, Covering Health: Monitoring the Pulse of Health Care Journalism, 6-15-16)
HIPAA G02: HIPAA Guidance -- Safeguarding Patients’ Photographs and Recordings
No, HIPAA was not waived in Orlando, and here's why (Jacqueline Howard, CNN, 6-14-16)
Hurricane Katrina Bulletin: HIPAA Privacy and Disclosures in Emergency Situations (HHS)
Orlando shooting: Why the mayor’s HIPAA waiver request is important for gay rights (Ariana Eunjung Cha, WaPo, 6-13-16)
HIPAA’s Use as Code of Silence Often Misinterprets the Law (Paula Span, NY Times, Health, 7-21-15). The privacy rules created under the Health Insurance Portability and Accountability Act, designed to keep personal health information private, apply "only to health care providers, health insurers, clearinghouses that manage and store health data, and their business associates." The "law does not prohibit health care providers from sharing information with family, friends or caregivers unless the patient specifically objects. Even if he or she is not present or is incapacitated, providers may use 'professional judgment' to disclose pertinent information to a relative or friend if it’s 'in the best interests of the individual.'"
HIPAA Criminal Prosecutions: Few and Far Between (PDF, Doreen Z. McQuarrie.Feb. 2007)
Nurse admits to privacy violation in HIPAA case (AP, 4-17-08)
Is HIPAA Creating More Problems Than It's Preventing? (Neil Chesanow, Medscape, 9-16-13)
Do Family, Friends' Photos Trigger HIPAA Violations? (John Commins, HealthLeaders Media, 3-8-2010). You should be able to take photos of your own child or other family member in the hospital, but you mustn't inadvertently catch another patient, or a medical health record, etc. If you are doing photographs for a story, you need a HIPAA release signed for every patient photographed. Hospital personnel may overreact about cell phone photos even of your own family members because HIPAA rules are not easy to master and personnel are duty-bound to observe them.
(St. Jude Children's Research Hospital)
HIPAA, electronic health records, patient rights, and a reporter's
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Resolving issues with electronic health records (EHRs)
(especially privacy, safety, and security)


The medical chart is coming to an end. Here’s why. (Mike Sevilla, KevinMD, 8-29-14) Medical professionals "have lost the art of telling the story of our patients because of the digital record....Many believe that the electronic medical record is a way for “big brother” (whomever that is) to keep an eye on clinicians, and eventually find a way to compensate less." And with security breaches more common, one day patients will insist that certain things be left out of the medical record.
Medical Records: Top Secret (Elisabeth Rosenthal, NY Times 11-8-14) "In a digital age when we can transfer money to purchase a house online or view a college transcript by logging on to a secure website, why is it so often difficult for patients to gain access to their medical data? And who controls our health information? ...Although doctors and hospitals legally own their medical charts, patients have a right to have access in a timely manner — HIPAA requires a response within 30 days of a patient request — and at a reasonable processing cost."
Spread of Records Stirs Patient Fears Of Privacy Erosion (Theo Francis, WSJ, 12-26-06). Ms. Galvin's Insurer Studies Psychotherapist's Notes; A Dispute Over the Rules. "As the health-care industry embraces electronic record-keeping, millions of pages of old documents are being scanned into computers across the country. The goal is to make patient records more complete and readily available for diagnosis, treatment and claims-payment purposes. But the move has kindled patient concern about who might gain access to sensitive medical files -- data that now can be transmitted with the click of a computer mouse."
Stop the privatization of health data (John T. Wilbanks and Eric J. Topol, Nature, 7-20-16) Tech giants moving into health may widen inequalities and harm research, unless people can access and share their data, warn the authors.
How Mayo Clinic Is Using iPads to Empower Patients (David J. Cook, Jeffrey E. Thompson, Joseph A. Dearani, and Sharon K. Prinsen, Harvard Business Review, 2-24-14) Empowering patients and setting their expectations requires effectively providing them with "A plan of stay" (which includes a "plan of day"), modular educational materials ("just in time" materials relevant to the day's needs and expectations), gaining strength modules (that set daily expectations for physical activities such as walking and breathing exercises and provide patients with tools to self-assess and report things like pain and mobility), and recovering planning information (on wound care, exercise and diet, activity restrictions, follow-up appointments, and potential complications and how to recognize them).
How close are we to meeting the promise of electronic health records? (Carla K. Johnson, Covering Health, 3-6-15) "Smooth patient handoffs, data-driven performance improvement and real-time analytics are still mostly dreams, although those ambitions have been talked about for years," said specialists on health information technology, at a panel on the topic, summarized here.
Hazards tied to medical records rush (Christopher Rowland, Boston Globe, 7-20-14) Subsidies given for computerizing, but no reporting required when errors cause harm. The explosion in the use of the electronic records has created the potential for efficiencies and safety benefits but also new risks for patients, the scope of which still is not fully understood.
Electronic health records ripe for theft (David Pittman, Politico 7-13-14)
Six months after the Target security breach, report says cases of identity theft are increasing (Teresa Dixon Murray, The Plain Dealer, 7-9-14). "Medical providers are particularly vulnerable to data breaches because health records generally contain detailed desirable personal information such as Social Security numbers, but the offices of doctors and other medical providers generally don't have the same firewalls and levels of protection that banks do."
Major medical records breaches pass 1,000 milestone as enforcement ramps up (Joseph Conn, Modern Healthcare June 2014)
Breaches Affecting 500 or More Individuals (HHS, Health Information Privacy)
3 Approaches to the EHR Patient Control Debate (Power Your Practice), about the Patricia Galvin case.
The HiTech Act of 2009

UT Southwestern Medical Center (example of a secure online health management tool that the patient also has access to)
Spread of Records Stirs Patient Fears Of Privacy Erosion (Theo Francis, WSJ, 12-26-06) Patricia Galvin's Insurer Studies Psychotherapist's Notes; A Dispute Over the Rules. "The U.S. Department of Health and Human Services implemented standards in 2003 for guarding patient privacy, supplementing a patchwork of state laws. The federal standards, which grew out of the 1996 Health Insurance Portability and Accountability Act, single out psychotherapy notes for extra protection. Critics claim that loopholes in the rules have left patient privacy under threat." Galvin's "experience offers a look at how increasingly complex confidentiality issues are affecting patients and their insurance coverage." "As the health-care industry embraces electronic record-keeping, millions of pages of old documents are being scanned into computers across the country. The goal is to make patient records more complete and readily available for diagnosis, treatment and claims-payment purposes. But the move has kindled patient concern about who might gain access to sensitive medical files -- data that now can be transmitted with the click of a computer mouse."
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Patient privacy and related issues


Here's Looking at You: How Personal Health Information Is Being Tracked and Used (Jane Sarasohn-Kahn, California Healthcare Foundation, July 2014)
HIPAA Helper: Who is Revealing Your Private Medical Information? (Charles Ornstein, Annie Waldman and Mike TigasPro Publica, 12-29-15) For the first time, you can easily search whether your hospital, clinic, pharmacy or health insurer has been named in patient privacy complaints, breaches or violations.
Journal; Capital Shrink Rap (Frank Rich, NY Times, 10-7-98) "Washington's fear and ignorance of mental illness has led to private local tragedies (the untreated Vincent Foster's suicide) and shoddy public policy, which then leads to preventable national tragedies...I wonder if today's Washington would even muster the same outrage once provoked by one of the most unsavory incidents of Watergate -- the White House ''plumbers'' break-in to the Beverly Hills office of Daniel Ellsberg's therapist in a failed effort to burglarize his psychiatric files."
Secret video: Mercy guard threatened photo-taking mom (Sarah Okeson, News-Leader 7-19-14) Woman who took photo of her son to post on Facebook was taken to an office where she was questioned by a security guard "The idea is not to prohibit patients from capturing personal memories," said Mercy spokeswoman Sonya Kullmann. "However, we want to ensure that we protect everyone's right to privacy. That includes other patients, visitors, co-workers and providers who may not want to appear in someone else's photograph, video or recording." There is such a thing as carrying things too far.
Can medical records be released without consent? Supreme Court refuses case. (Warren Richey, Christian Science Monitor, 10-3-11) The US Supreme Court turned aside an appeal involving the scope of privacy protections for a patient’s medical records when a state agency seeks to force a doctor to disclose those records without first obtaining a patient’s consent. (Eist v. Maryland State Bd. of Physicians) Issues of case, on SCOTUSblog: (1) Whether a state may restrict a patient's federal constitutional right to privacy by compelling a physician to disclose confidential patient records without notice to and authorization by the patient and in conflict with the physician's ethical obligations; (2) whether a state agency may simultaneously serve as investigator, prosecutor and adjudicator with respect to a licensee under its jurisdiction without amending the state's constitution which explicitly separates legislative, executive and judicial powers; and (3) whether a physician may be disciplined by a state's medical licensing board if: (a) the relevant statutory language - “fails to cooperate with a lawful investigation” - is unconstitutionally vague; (b) the board never notified the patients it was seeking their confidential medical records; or (c) the board's simultaneous roles as investigator, prosecutor and adjudicator deprive petitioner of his right to due process.
Medical privacy (summary of info and links to more on breaches of privacy, damages and alternatives, electronic systems, many releases that are allowed by law, comparison of lists of data breaches)
Medical privacy
Baby Pictures at the Doctor’s? Cute, Sure, but Illegal (Anemona Hartocollis, NY Times, 8-9-14). Letters to the Editor, in responseWhen Baby Pictures Offend the Law
Secret video: Mercy guard threatened photo-taking mom (Sarah Okeson, News-Leader 7-19-14) Woman who took photo of her son to post on Facebook was taken to an office where she was questioned by a security guard "The idea is not to prohibit patients from capturing personal memories," said Mercy spokeswoman Sonya Kullmann. "However, we want to ensure that we protect everyone's right to privacy. That includes other patients, visitors, co-workers and providers who may not want to appear in someone else's photograph, video or recording."
VA uses patient privacy to go after whistleblowers, critics say (Joe Davidson, Washington Post, 7-17-14) A registered nurse was threatened with suspension and stripped of managerial duties after she complained about how a veteran was treated.
Spread of Records Stirs Patient Fears Of Privacy Erosion (Theo Francis, WSJ, 12-26-06--behind a paywall, for subscribers only, but you may be able to read it at the library).
Could photographing an ED patient get you sued? (PDF, ED Legal Letter April 2009) Without consent, you are asking for a lawsuit.
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