A Patient Family Advisory Council’s reduction of waiting room anxiety: I think about who’s coming after me

Mal’s story on the Patient/Family Advisory Council:

I’m the Co-Chair of a Patient/Family Advisory Council (PFAC) at Beth Israel Deaconess Medical Center in Boston.  

Several of us on the PFAC who’d been through the surgical experience at BI, in the waiting room as a patient and as a family member, found it was not a very comforting or personal experience, but was rather stressful.  One of our projects was making that experience less stressful for the loved ones waiting.  A doctor and an I.T. [Information Technology] staff member came to the PFAC and asked for our input.  Several of us shared how impersonal it was.  It was an open area, at the main entrance to the hospital.  It created extra stress with all the people coming and going constantly.  

Now there’s a new waiting area that was created, away from the main entrance, that also has a newer technology of communicating to people where their family member is in terms of the surgical process.  It’s an electronic board, so I can see, for example, my spouse is in Surgery, or, they’re in Recovery.  They give each patient a special code on the screen, so it’s HIPAA compliant [to protect privacy].  And there’s an actual person to talk to when they want to check in and a person who knows the information about their family member.   

  

In my volunteer work on the Boards of nonprofit organizations, when I feel strongly about something, I jump into it.  I got really great care at the hospital, and I also saw room for improvement.  I think about who’s coming after me.

Read another story about a Patient/Family Advisory Council.

Sharing doctors’ Open Notes with patients

Jan Walker and her colleagues just published an article about patients' and doctors' attitudes toward sharing doctors' appointment progress notes with patients. In an interview, she described some of the most interesting findings:

We ran the Open Notes experiment at three sites, in urban/suburban Boston, rural Pennsylvania, and inner-city Seattle over 12 months, through this summer. The published article discusses the results of surveys, before the experiment began, of both the doctors and patients about the idea of open notes. According to these findings, patient expect that reading notes will help them understand their health and conditions better. The team also surveyed patients and doctors after the 12 month period, to find out what actually happened, and hopes to publish those findings in spring/summer 2012.

So, results are pending, but the researchers have heard some stories along the way of impacts of sharing notes, and are sometimes catching things. Early on, there was a doctor who called to mention his first experience with Open Notes, saying that at an appointment with a patient, he’d mentioned a test, but had forgotten to order it. The patient read Open Notes and told the doctor the test hadn’t been ordered, and asked that it be ordered. As another example, we had a patient who went home after her appointment and thought, I remember the doctor said three things, but I forgot one of them. So she read the note, in which the doctor advised that she should check out a spot on her skin. So she had a Dermatology appointment, which was a good thing, as it turned out that the spot DID need medical attention.

So things that were missed may be picked up earlier. One doctor, who’d been dragged somewhat reluctantly into this project, said, “a few months in, I felt safer because there are more eyes”; medical care is so complicated, that the extra set of eyes really helps. We had approval to run the experiment for 12 months. At the end of the study, we notified the doctors that the official study period was ended and that they could certainly drop out and we would turn it off. Not one doctor asked to have Open Notes turned off.

This could create more trust between doctors and patients, by opening the black box, and making all this less mysterious than patients may have thought. Some patients, we learned to our surprise in the focus groups, don’t realize that doctors write notes about the visit. Patients don’t all know they have a legal right to their medical records, in the Federal HIPAA law.

We thought that the younger, more tech savvy, better educated patients would be very interested in the doctor’s notes, but not necessarily older, less savvy or educated patients. But across the board, everybody is interested. That really surprised us.

Jan’s advice: Even if your doctor doesn’t use an electronic medical record, ask to get a copy of the doctor’s note about your visit.

The article appeared in the Dec. 20 issue of Annals of Internal Medicine. Thanks to Jemma Weymouth and Morgan Warners of Burness Communications for connecting me with Jan.

Read another article on a provider that gives even their woofing patients access to their progress notes.

Now that he has fallen: Teddy Kennedy's contribution

As author John James says, "I remember the days early in my adult life when I believed that a more socialized system of healthcare was overdue in America. Ted Kennedy was a hero of that vision, and I bought one of his books. Once I became a 'responsible' adult my personal wellbeing trumped any social goals I had at a more equitable healthcare system...until that healthcare system took my son's life."

Ted Kennedy starts his 1972 book: In Critical Condition - The Crisis in America's Health Care with this:

"I am shocked to find that we in America have created a health care system that can be so callous to human suffering, so intent on high salaries and profits, and so unconcerned for the needs of our people. American families, regardless of income, are offered health care of uncertain quality, at inflated prices...Our system especially victimizes Americans whose age, health, or low income leaves them less able to fight their way into the health care system...It is an industry which strongly protects the profits but only weakly protects the healing and rights of people."

John James continues, "This was published 37 years ago and the pages on my copy of this book are turned a dingy yellow. Sadly, very sadly, the words of Senator Kennedy are more true today than they were 37 years ago. He ran the good race, but we must carry on now that he has fallen and the finish line is more distant than ever."


I'm also missing Teddy, who I increasingly realize was one of our greatest public health heroes. Here is a list of the healthcare laws he was influential in shaping, courtesy of the Massachusetts Hospital Association's Monday Report: The National Community Health Center Program; The Family Protection of Medicine Act; Meals on Wheels and the Women, Infants, and Children Nutrition Program; National Military Child Care Act; Ryan White CARE Act; Mammography Quality Standards Act; Human Services Reauthorization Act; Health Insurance Portability and Accountability Act (HIPAA); the Mental Health Parity Act; Children's Health Insurance Program; Minority Health and Health Disparities Research and Education Act; Pediatric Graduate Medical Education Act; Family Opportunity Act; and Genetic Information Nondiscrimination Act. In addition was his sustained strong support of funding for cancer research.

Advice to public health advocates: Take heart from Teddy's example.

Read another story about Teddy’s encounter with cancer.

Read all about it: UCLA Medical Center's healthcare for Farrah, Britney Spears, Tom Cruise & Mariah Carey

California health regulators have connected 14 more people affiliated with UCLA Medical Center, including four physicians, to the improper viewing of celebrity medical records, bringing the number of current and former workers apparently implicated in the snooping scandal to 68.

The additional violations came to light in a report by the California Department of Public Health, which was sent to the hospital Friday. The findings are the latest to stem from reports in The Los Angeles Times about UCLA employees' prying into records of celebrities and co-workers. The regulators faulted UCLA for failure to maintain patient confidentiality and report the breaches to regulators.

One employee reviewed the records of actress Farrah Fawcett on 104 days between July 1, 2006, and May 21, 2007. She also looked at the records of pop star Britney Spears, whose medical files have been viewed inappropriately by dozens of other UCLA workers. The employee was indicted by a federal grand jury last month for allegedly selling information to the news media from medical records of celebrity patients. If convicted, she faces up to 10 years in prison.

Earlier news stories described the inappropriate viewing of the UCLA Medical Center's healthcare records of Tom Cruise and Mariah Carey.

State inspectors found that 13 other people affiliated with UCLA apparently snooped on Britney's records between July 2006 and May 2007. That is in addition to 53 staffers identified in three previous state reports who looked at her records on other occasions. The 13 included three physicians, a physician trainee, three registered nurses, two outside contractors, a volunteer and three support staff.

A note on this blog's policy on the "outing" of healthcare organizations where errors have occurred: Normally I do not name the organization. In this case, because of their published history of numerous repeated errors with no apparent system safeguard to prevent their recurrence, I have referred to UCLA Medical Center by name.

Advice to Hollywood celebrities: Choose other places than UCLA Medical Center to get your healthcare, unless you want riffraff like me to read about it.

Read another privacy story.

Thanks to Charles Ornstein for the source article in the May 14 issue of the Los Angeles Times.

The nurse refused to discuss it: HIPAA and a patient’s privacy

Nurse I.Y. in Iowa wrote to an Ann Landers nurse advisory line:

Question: Recently, I cared for an 86-year-old woman admitted to my unit after a massive stroke. She was unresponsive and not expected to survive. That afternoon, her adult daughter, who lives in another state, called the nurses' station to ask about her mother’s condition. The nurse who answered the phone refused to discuss it with her, explaining that when the patient can't give consent, nurses are prohibited from disclosing any information under the federal Health Insurance Portability and Accountability Act (HIPAA) privacy rule.

Not realizing how ill her mother was, the daughter delayed arranging her visit until the next day. When she arrived, her mother was dead.

This doesn't seem right to me. Does HIPAA really prohibit us from disclosing patient information to family members when the patient can't give consent?

Answer by the nursing Advice Editor:
No, but misunderstandings like this are common. Fearful of lawsuits or fines, many health care professionals apply the privacy rule inappropriately, withholding needed health care information from other caregivers, family members, and even patients themselves.

In fact, the HIPAA privacy rule gives health care professionals a great deal of latitude to exercise their professional judgment and common sense. On its web site, the US Dept. of Health and Human Services (HHS) addresses situations like the one you describe. When the patient is incapacitated and unable to give consent, a health care professional may share information about her care "when, in exercising professional judgment, [he] determines that doing so would be in the best interest of the patient."

Advice to family members needing to know about a loved one's condition: See the HIPAA web site to learn what the law really says.

Read another patient privacy story, or read more from the Nursing2007 magazine's source column in the October issue.

Birthday parties have been cancelled: Secrecy through HIPAA

An Emergency Room nurse in Illinois told Gerard Nussbaum he could not stay with his father-in-law while the elderly man was being treated for a stroke. Another nurse threatened Gerard with arrest for scanning the older man’s medical chart to prove to her that she was about to administer a dangerous second round of sedatives.

Both nurses claimed—wrongly--that the Health Insurance Portability and Accountability Act (HIPAA) prohibited them from helping. But Gerard knew better, as a health care and HIPAA consultant, so he stood his ground.

Recent government studies have found some health care providers apply the HIPAA regulations overzealously, blocking family members and caretakers from learning useful information. Birthday parties in nursing homes in New York and Arizona have been cancelled for fear that revealing residents’ dates of birth would be illegal.

In reality, HIPAA says health care providers may share information with others unless the patient objects, but does not require them to do so. Their disclosure of information is voluntary; the law leaves them broad discretion.


Advice to patient advocates: Stand your ground with health care providers if you need some information to help your patient.

Read another of our privacy stories, or read Jane Gross’ source story in today’s New York Times.