As hospitals walk the tightrope of patient data-sharing, one system offers a new balance

Sharing of one’s personal health and medical data with researchers and industry raises issues of trust and privacy.
For example one might wonder if one’s health issues will be shared with advertisers or one’s health insuance. Or one might concerned that a company would profit from one’s medical record.

As hospitals walk the tightrope of patient data-sharing, one system offers a new balance

From the May 28, 2020 University of Michigan HealthLab News Release
Industry wants access to massive data troves, but patients deserve transparency and privacy; Michigan Medicine approach offers a path forward.

Every major medical center in America sits on a gold mine. The data they hold about their patients and research participants could be worth millions of dollars to companies that would explore it for clues that could lead to new medicines, medical technologies, health apps and more…
…

The crux of the [University of Michigan] system, launched in 2018, is an easy-to-understand informed consent document that research participants can choose to sign, in addition to the forms that they sign to take part in a U-M-run research project. The additional consent focuses on sharing their information, and any samples taken from them, outside the university.

They must first discuss the special outside-sharing consent form with research staff, who assess each participant’s understanding of what giving the additional consent means.

The critical passage in the form reads: “You give permission to share your samples and information with researchers around the world including those working for companies. Researchers and their organizations may potentially benefit from the sale of the data or discoveries. You will not have rights to these discoveries or any proceeds from them.”
…
More than half of research volunteers asked for such consent have given it. Once they do so, it opens up the possibility (with additional legal and ethical steps) for companies, foundations, medical specialty societies and nongovernmental agencies to access their samples and data to move innovation forward.

If their samples are being sought for a project with a specific company, they will be told about the project and company, though their consent applies to all approved industry use. They’re told they can revoke their consent in the future, stopping their data from being shared further.
More at the news release

[News article] The Rise of Medical Identity Theft

From the 7 February 2014 Stateline news article 

By Michael Ollove, Staff Writer

A young woman retrieves a patient’s medical records at the Family Health Center in Louisville, Ky. The theft of personal medical information, whether paper-based or electronic, is a large and growing problem. (Getty)

If modern technology has ushered in a plague of identity theft, one particular strain of the disease has emerged as most virulent: medical identity theft.

Last month the Identity Theft Resource Centerproduced a surveyshowing that breaches of medical records involving personal information accounted for 43 percent of all records breaches involving personal information reported in the United States in 2013. That is a far greater chunk of record breaches than those involving banking and finance, the government and the military or education.

The definition of medical identity theft is the fraudulent acquisition of someone’s personal information – name, Social Security number, health insurance number – for the purpose of illegally obtaining medical services or devices, insurance reimbursements or prescription drugs.

“Medical identity theft is a growing and dangerous crime that leaves its victims with little to no recourse for recovery,” said Pam Dixon, the founder and executive director of World Privacy Forum. “Victims often experience financial repercussions and worse yet, they frequently discover erroneous information has been added to their personal medical files due to the thief’s activities.”

The Affordable Care Act has raised the stakes. One of the main concerns swirling around the disastrous rollout of federal and state health insurance exchanges last fall was whether the malfunctioning online marketplaces were compromising the confidentiality of Americans’ medical information.  Meanwhile, the law’s emphasis on digitizing medical records, touted as a way to boost efficiency and cut costs, comes amid intensifying concerns over the security of computer networks.

Edward Snowden, the former National Security Agency contractor who has disclosed the agency’s activities to the media, says the NSA has cracked the encryption used to protect the medical records of millions of Americans.

Multiple Motives

Thieves have used stolen medical information for all sorts of nefarious reasons, according to information collected by World Privacy Forum, a research group that seeks to educate consumers about privacy risks. For example:

• A Massachusetts psychiatrist created false diagnoses of drug addiction and severe depression for people who were not his patients in order to submit medical insurance claims for psychiatric sessions that never occurred. One man discovered the false diagnoses when he applied for a job. He hadn’t even been a patient.
• An identity thief in Missouri used the information of actual people to create false driver’s licenses in their names. Using one of them, she was able to enter a regional health center, obtain the health records of a woman she was impersonating, and leave with a prescription in the woman’s name.
• An Ohio woman working in a dental office gained access to protected information of Medicaid patients in order to illegally obtain prescription drugs.
• A Pennsylvania man found that an imposter had used his identity at five different hospitals in order to receive more than $100,000 in treatment. At each spot, the imposter left behind a medical history in his victim’s name.
• A Colorado man whose Social Security number, name and address had been stolen received a bill for $44,000 for a surgery he not undergone.

  …

Related articles

• The Changing Face of Identity Theft
• Seven Signs You’re A Victim Of Identity Theft
• From the Office of the Irs: the 2013 Tax Season Is Underway and Companies Accross America Want to Help.***don’t Let Them***investigate Them First***the Following Information Is the Kind of Scams That Take Place After You Go File Your Tax Returns With a Ne
• Meet the Crooks Behind Identity Theft
• What Medical Identity Theft Victims can Do
• The Potential Damages and Consequences of Medical Identity Theft and Healthcare Data Breaches 2010
• The rise of medical identity theft in healthcare
• Nearly half of identity thefts in U.S. are medical info

 

[Reblog] Are you a victim of patient profiling?

Very controversial, this posting has 113 comments as of Feb 4, 2014.
Two (or more! ) sides to this.
On a personal level, my medical record very boldly on the first page states two conditions
— Anxiety/Depression (have not needed medication for these conditions in 5 years)
— High Cholesterol ( have disputed the doctor on this, based on how I have read the scientific literature)

So, yes…I feel profiled!

Yet, the doctor is doing the best he can. He can only see patients for 15 minutes. His electronic records are
basically, well, dictated by the group he is in.

On another note, just as I am not defined by my job or resume…
I am also not defined by my medical record!

From the 4 February 2014 Kevin MD article by Pamela Wible, MD

Ever felt misjudged by a doctor? Or treated unfairly by a clinic or hospital? You may be a victim of patient profiling.

Patient profiling is the practice of regarding particular patients as more likely to have certain behaviors or illnesses based on their appearance, race, gender, financial status, or other observable characteristics. Profiling disproportionately impacts patients with chronic pain, mental illness, the uninsured, and patients of color. Like racial profiling by police, patient profiling by physicians is more common than you think.

 

We rely on doctors to first do no harm–to safeguard our health–but profiling patients often leads to improper medical care, and distrust of physicians and the health care system, with potential lifelong consequences.

For the first time, people share their stories:

I was once denied pain meds after a fall off a 10-foot porch by the same doc who gave my pretty female friend pain meds after getting two stitches in her finger. I felt like my appearance had something to do with it.” ~ Jay Snider

 

Read the entire article (with 113+ comments) here

Related articles

• Racial profiling is never OK, don’t stand for it
• What if patients took charge of their medical records?
• [Reblog] What happens to medicine when it has no heroes?
• Things Physicians and Patients Should Question – With Lists From Choosing Wisely
• How to get naked with your doctor: a doctor gets naked with us
• Well: When Doctors ‘Google’ Their Patients
• Wrong Chart? Dead Patient?: HHS Issues Safety Tips for Using Electronic Health Records
• [Reblog] Saying No to “Know Your Numbers” campaigns – Health News Watchdog blog
• Paper cutting: Methodist takes next step in e-records
• Your Medical Records Are Already Out There

 

Patients Feel More Control of Their Health When Doctors Share Notes

 

From the 1 October 2012 article at Science Daily

Patients with access to notes written by their doctors feel more in control of their care and report a better understanding of their medical issues, improved recall of their care plan and being more likely to take their medications as prescribed, a Beth Israel Deaconess Medical Center-led study has found…

…

“Open notes may both engage patients far more actively in their care and enhance safety when the patient reviews their records with a second set of eyes.”

“Perhaps most important clinically, a remarkable number of patients reported becoming more likely to take medications as prescribed,” adds Jan Walker, RN, MBA, co-first author and a Principal Associate in Medicine in the Division of General Medicine and Primary Care at BIDMC and Harvard Medical School. “And in contrast to the fears of many doctors, few patients reported being confused, worried or offended by what they read.”…

..

Of 5,391 patients who opened at least one note and returned surveys, between 77 and 87 percent reported open notes made them feel more in control of their care, with 60 to 78 percent reporting increased adherence to medications. Only 1 to 8 percent of patients reported worry, confusion or offense, three out of five felt they should be able to add comments to their doctors’ notes, and 86 percent agreed that availability of notes would influence their choice of providers in the future.

Among doctors, a maximum of 5 percent reported longer visits, and no more than 8 percent said they spent extra time addressing patients’ questions outside of visits. A maximum of 21 percent reported taking more time to write notes, while between 3 and 36 percent reported changing documentation content…

Walker suggests that so few patients were worried, confused or offended by the note because “fear or uncertainty of what’s in a doctor’s ‘black box’ may engender far more anxiety than what is actually written, and patients who are especially likely to react negatively to notes may self-select to not read them.”..

 

 

 

Related articles

• Patients Like Reading Their Doctors’ Notes (nlm.nih.gov)
• Patients Feel More Control Of Their Health When Doctors Share Notes (yubanet.com)
• Doctors open their notes to patients – and patients like what they see (washingtonpost.com)
• Giving patients more control: share doctor’s notes (enterprisenews.com)
• OpenNotes: Great News for Patient Engagement (thehealthcareblog.com)
• Patients to View Doctors’ Notes Online (blogs.lawyers.com)
• OpenNotes: The Results Are In (thehealthcareblog.com)

 

E-health Records Should Play Bigger Role In Patient Safety Initiatives, Researchers Advocate

http://diseasemanagementcareblog.blogspot.com/2011/07/more-on-electronic-health-record.html

From the 20th July Medical News Today article

Patient safety researchers are calling for the expanded use of electronic health records (EHRs) to address the disquieting number of medical errors in the healthcare system that can lead to readmissions and even death. Their commentary is in the July 6 issue of JAMA, The Journal of the American Medical Association.

“Leading healthcare organizations are using electronic health records to address patient safety issues,” said Dean Sittig, Ph.D., co-author and professor at The University of Texas Health Science Center at Houston (UTHealth) School of Biomedical Informatics. “But, the use of EHRs to address patient safety issues hasn’t hit the mainstream yet and we think everyone should be doing this.”

One way to fast-track the use of EHRs to address patient safety issues would be to incorporate the annual patient safety goals of The Joint Commission, a healthcare accreditation organization, into the criteria for the certification of EHRs, said co-author Ryan Radecki, M.D., who is scheduled to join the UTHealth faculty Aug. 1….

Click here to read the rest of the news article

Related articles

• Make Patient Safety Goals Part Of Meaningful Use (informationweek.com)
• Electronic health records software poses security concerns (medcitynews.com)
• Wayne Memorial Hospital Selects Electronic Forms Software from Access to Seamlessly Integrate e-Forms and Clinical Data into EHRs via Meditech (prweb.com)
• More On Electronic Health Record Prescribing Errors (diseasemanagementcareblog.blogspot.com)

Meet e-patient Dave – a voice of patient engagement (and related resources)

https://ted.com/talks/view/id/1181

e-patient Dave de Bronkart was successfully treated for kidney cancer at a very late stage. He credits his recovery to using the Internet to find trusted medical information as well as to get advice from patients via support groups.

His video Let Patients Help outlines how and why patients should empower themselves.
Some video highlights

• Patients are presently the most underutilized part of the health team
• The e-patient movement is at least partly based on hippie ideals of self-reliance and self-care (think Whole Earth Catalog)
• e-patients are empowered, engaged, equipped and enabled through finding information to use in discussions regarding treatment options with their health care providers
• Support groups often are useful in providing information not available at other sites (as which doctors specialize in certain treatments)
• Patients not only need quality information, but also access to their raw medical data

Related Resources

How to evaluate medical and health information

• Evaluating Internet health information (Penn State)
• Evaluating Medical Research Findings and Clinical Trials (Family Caregiver Alliance)
• A Consumer’s Guide to Taking Charge of Health Information (Harvard Center for Risk Alliance)
• Evaluating Health Information on the Internet (National Cancer Institute)
• Quackwatch: Your Guide to Quackery, Health Fraud, and Intelligent Decisions (Stephen Barrett, M.D.)

Great starting places for quality health and medical information

• MedlinePlus (US National Library of Medicine/National Institutes of Health)
  Links to information on over 700 diseases/conditions, drugs & supplements, videos & tools (as health calculators, anatomy     videos, directories (as Find an Eye Doctor), and links to organizations

• UpToDate For Patients
  Click on the Patient Information tab to find free information written for patients. These topics help one to learn more about a medical condition, better understand management and treatment options, and have a better dialogue with health care providers. This free information is adapted from the subscription based service UpToDate (which is for and by physicians and researchers).
• US Centers for Disease Control and Prevention (CDC)
  Includes Health Topics A to Z, and sections  as Diseases and Conditions as  Healthy Living
• eMedicine Consumer Health
  Comprehensive continuously updated health and medical information written by physicians. Information on specific diseases/conditions includes overviews, causes, diagnosis, treatments, outlook, and additional links. Slideshows, images, pictures,medications, and quizzes.
  emedicine.com is geared towards health professionals. However it is free to all who register.

•  But Wait, There’s More!
• Online consumer health guides, as Consumer Health (University of Toledo), Consumer Health (University of Florida), Consumer Health Guide (University of California)
  Libguides are written by librarians on every subject imaginable. They are free to all.
• Never underestimate the finding power of a librarian.

Many academic and medical institutions offer at least some reference services to the general public.  Be sure to ask for a reference librarian. He or she not only has a master’s degree in Library Science, but often additional related education in health related areas.

Online Health Communities/Support Groups

• Self-Help Group SourceBook Online
  A starting point for finding every type of national, international, model and online self-help support group that is available starting point for finding every type of national, international, model and online self-help support group that is available. (MentalHelp.net)

• MedlinePlus 
  Search with a phrase as “support groups” cancer or select a Health topic and select an organization.
• Medpedia communities
  This site allows people with common health interests to share information and communicate. Anyone may create a community of interest and anyone may join.Medpedia is an open platform connecting people and information to advance medicine. Users include health care professionals, health care organizations, expert lay persons, students, and scientists.
• MedHelp International
       This online health community which not only provides health information but helps patients actively manage their health through online personal health records andMedhelp trackers (iphone friendly options).
  The People option allows one to search by a disease or condition to find related information (including symptoms, treatments, resources). One can also view postings and blogs by other members and interact with them.
  Medical experts helps users by answering questions in Ask-an-Expert forums, participating in conversations with members in free live health chats, and sharing their knowledge and the latest news in blogs
• Mayo Clinic Online Community is ” free and is open to anyone, whether you have been a patient at Mayo Clinic or not. It includes content from various Mayo Clinic blogs,health and medical videos from Mayo’s YouTube channel and links to news articlesabout Mayo Clinic research and treatment advances. It also features a discussion forum where members can connect with others who have similar interests or concerns.”

A few related postings from my blog

• [How to] Explore Your Treatment Options
• Free Online Anatomy Sites 
• How to obtain free/low cost articles from medical journals
• Plain language summaries Web sites explain medical studies for all