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Big Data Profits If We Deregulate HIPAA



This blog post was written by Kenny Gutierrez, EFF Bridge Fellow.

Recently proposed changes to the Federal Health Insurance Portability and Accountability Act (HIPAA) would intrude into your most personal and intimate health information. The Office of Civil Rights (OCR), part of the U.S. Department of Health (HHS), suggests relaxing our health protection to address misunderstandings by health professionals regarding the disclosures currently allowed.

The EFF recently objected to the proposed changes. The most worrying change would be to broaden the sharing of your health information without your permission by adding “case management” and “care coordination” to the definition of “health operations”, which is particularly worrying as these broad terms are not defined. In addition, the changes aim to lower the disclosure standard for emergencies. They will also require affected companies to provide Personal Health Information (PHI) to uncovered mobile health applications at the patient’s request. The changes are tedious enough individually. Taken together, the effects on the release of PHI with and without consent pose a threat to patient health and privacy.

Trust in healthcare is critical

The proposed changes would undermine the necessary confidence that patients have in health workers to disclose their sensitive and confidential medical information. When patients no longer feel that their doctors are protecting their PHI, they will not disclose it or even seek treatment. For example, because addiction problems are associated with prejudice and stigma, an opiate addict is less likely to seek treatment or fully disclose the severity of their condition if they fear their diagnosis could be leaked without their consent. As a result, the HHS proposal will hinder care coordination and case management. This would increase the cost of health care as fewer preventive measures are taken in the short term and treatment becomes significantly more expensive in the long term. Untreated mental illness costs the nation more than $ 100 billion annually. Currently, only 2.5 million of the 21.2 million people with mental illness are seeking treatment.

The current HIPAA privacy rule is flexible enough to counter the misguided claims made by some healthcare professionals. It protects patient privacy while allowing disclosure without patient consent in critical cases such as treatment, an emergency, and when a patient poses a threat to themselves or public safety.

So why is HHS trying to change an already flexible rule? Two congressional hearings in 2013 and 2015 indicated that there was significant misunderstanding among medical professionals about HIPAA and permissive disclosures. As a result, HIPAA is mistakenly misunderstood as a strict anti-disclosure measure and mistakenly referred to as a “regulatory barrier” or “burden”. Many of the proposed changes double that misunderstanding by deregulating privacy rather than directly addressing the confusion of some professionals with improved education, training and advice.

The HHS proposals would limit our health data protection

Changes to HIPAA cause more problems than solutions. Here’s a quick rundown of the most disturbing modifications:

  1. The proposed rule would massively expand the use and disclosure of personal health data (PHI) by an affected facility (CE) without the consent of the patient. In particular, it allows unauthorized use and disclosure for “care coordination” and “case management” without adequately defining these vague and overly broad terms. This extended exception would swallow the consent requirement for many uses and disclosure decisions. As a result, big data (like corporate data brokers) would get this PHI and sell it. This could lead to discrimination in insurance policies, housing, employment, and other critical areas because of pre-existing conditions such as substance abuse, mental illness, or severe stigma disabilities.
  2. HHS is trying to lower the standard of involuntary disclosure from “professional judgment” to “good faith”. Doing so would undermine patient confidence. Currently, based on its “professional judgment”, a recorded company may disclose some PHIs that are in the best interests of the person. The change would lower that standard to “good faith” and would appear to put the burden on the injured person to prove their doctor’s lack of good faith. Professional judgment is more narrowly defined: it is objective and based on expert standards. “Good faith” is both broader and subjective.
  3. Currently, the default PHI disclosure standard for emergency disclosure is “immediate” harm, which implies a degree of certainty that harm is certain to be imminent. Instead, HHS only suggests “reasonably foreseeable” damage that is too broad and revealing. This can lead to a doctor reporting your PHI because you have a sugary diet, are a smoker, or have unprotected sex. In such cases, the damage is not “immediate”, but it can be “reasonably foreseeable”.

Weaker HIPAA rules for phone health apps would hand our data over to brokers

The proposed changes will likely result in more confidential, sensitive, and very valuable information being sent to companies not covered by HIPAA, including data brokers.

Most Americans have personal health apps on their phones for health goals such as weight management, stress management, and smoking cessation. However, these apps are not subject to HIPAA data protection.

A 2014 Federal Trade Commission study found that 12 personal health apps and devices transmitted information to 76 different third parties, and some of the data could be linked to specific users. In addition, 18 third parties received device-specific IDs and 22 other important health information.

If the proposed HIPAA changes are adopted, an insured provider would have to share a patient’s PHI with the developer of their health app at the request of the patient. That burdens the patient too much. They are often ill-equipped to understand privacy policies, terms of use, and permissions. You may also not be aware of the consequences of such disclosure of personal health information. In many ways, the deck is stacked against them. Policies, practices, and permissions for apps and devices are often confusing and unclear.

Worse still, depending on where the PHIs are stored, other apps can grant themselves access to your PHI via their own separate permissions. Such permissions have serious consequences as many apps can access data on their own device that has nothing to do with what the app is supposed to do. In a study of 99 apps, researchers found that free apps contain more unnecessary permissions than paid apps.

Next Steps

During the pandemic, we learned once again the importance of trust in the health system. Despite disregarding CDC guidelines, many people have not worn masks or practiced social distancing, which has fueled the spread of the virus. These are symptoms of public distrust of health professionals. Trust is critical to prevention, diagnosis, and treatment.

The proposed HHS changes to HIPAA health privacy regulations would undoubtedly lead to increased disclosure of PHI without patient consent and undermine the necessary trust that the health system requires. It is for this reason that EFF is opposed to these changes and will continue to fight for your privacy.


Colorado receives $94 million federal funding boost for behavioral health services – State of Reform



The Colorado Department of Human Services, Office of Behavioral Health (OBH) will receive more than $ 94 million in additional federal block grants over the next four years to increase drug use and mental health services as the state relies on that higher demand responded to that caused by the Covid19 pandemic.

OBH has worked with stakeholders including the state health planning and advisory board and a diverse group of providers to set priorities for the stimulus funds. Out of dozens of projects, OBH will use the first round of stimulus dollars totaling more than $ 43 million to fund equity, diversity and inclusion efforts; Peer support and recovery services; and treating people with severe mental illness (SMI) and substance use disorders.

“As we struggle with heightened behavioral health needs in Colorado, this funding will help us meet the requirements caused by COVID and even expand services across the state,” said Robert Werthwein, director of OBH. “We are grateful to our federal partners for recognizing the importance of the problem and giving us the tools to deal with the crisis.”

As part of the Coronavirus Response and Relief Supplemental Appropriations Act (CRRSA), the federal government has Drug Abuse Management and Mental Health Services (SAMHSA) has awarded the OBH an additional $ 27.1 million for the state’s Block Grant Program for the Prevention and Treatment of Substance Abuse (SABG) and an additional $ 16.2 million for the Community Mental Health Services (MHBG) block grant program, which must be issued by March 14, 2023. The block grants are administered by the OBH and are non-competitive federal awards that fund behavioral health services in all 50 states.

In addition to that boost, OBH will receive an additional $ 23.4 million and $ 28.1 million, respectively, for the SABG and MHBG programs through the American Rescue Plan Act (ARPA) stimulus package. OBH has these dollars to spend by September 30, 2025 and is working on a spending plan to support programs that have seen increased demand during the pandemic. Many of the priorities from the CRRSA funds are expanded through the ARPA funds. The state’s plan for the ARPA fund is due on July 2nd.

The preliminary spending plan for the $ 43 million CRRSA fund includes the following allocations for the next two years. The funding amounts could change depending on the bills passed in the 2022 legislative period or on emerging priorities.

Mental health and substance use funding plan for CRRSA funds

  • $ 5.28 million for peer-based recovery support services associated with SUD treatment providers, including those who have involuntarily committed to SUD treatment. Financing is provided by the state’s managed service organizations
  • $ 5 million for residential drug use treatment, withdrawal management (detox), and involuntary commitment services
  • $ 4.9 million to support the workforce, including training peer specialists and efforts to attract more blacks, indigenous and blacks (BIPOC) to behavioral health
  • $ 4.84 million for programs to support the mental health of children, adolescents and young adults
  • $ 3 million for assertive community or community-based treatment for adults with SMI
  • $ 2.8 million for Individual placement and support, a program to help people with mental illness and / or addictions find and keep a job
  • $ 2.6 million for programs that connect mothers, pregnant women and parents with behavioral health and recovery services
  • $ 2.35 million for the behavioral health crisis system, including safe transportation and marketing for diverse populations
  • $ 1.875 million for the state Forward together Prevention campaign
  • $ 1.875 million to expand school substance abuse screening
  • $ 1.68 million for drug abuse prevention programs among adolescents, particularly in BIPOC and LGBTQ communities
  • $ 1.5 million in peer-based mental health and drug use services across the state, including tribal and Latinx communities
  • $ 1.05 million for vacation homes and Housing assistance for people with SMI who are not housed
  • $ 700,000 in SUD services to tribal people across the state
  • $ 600,000 for a public awareness campaign on behavioral health related to the effects of the pandemic
  • $ 600,000 for a position as Director of Justice and Community Engagement, OBH form translation and branding materials, and public relations grants for organizations working with EDI populations
  • $ 450,000 for OBH’s bed capacity register

Approximately $ 2.3 million of the CRRSA grant will meet OBH’s administrative costs.

This news release was provided by the Colorado Department of Human Services.

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Get Ready for NORD’s Patient and Family Forum, Set for June 26-27



Those who wish to acquire practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD), and this year 26-26 June 27th takes place.

The conference brings together patients, families, healthcare professionals and other supporters to learn, share and connect.

Due to the ongoing COVID-19 pandemic, general sessions, breakout workshops and networking will again be virtual. The sessions, which provide perspectives from patients, caregivers and the medical community, are broadcast live and recorded for later viewing. Throughout the forum, participants can visit the exhibition hall and meet with other participants.

Also this year the Rare Impact Awards return as part of the program. This June 28 presentation honors individuals, organizations and industry innovators for their exceptional work benefiting the rare disease community.

“The health and well-being of people with rare diseases, their relatives and those who work to improve their lives continue to have top priority for all of us here at NORD,” said the forum message.

“The COVID-19 pandemic has given us new ways to connect with our community, and our 2020 virtual program has been the most successful forum to date! In 2021 we will continue to work hard to keep our community healthy and safe while we participate in this effective program, ”said NORD.

Registration for the “patient-centered” event costs US $ 39 for patients, nurses, students and representatives of the NORD patient organization. The cost is $ 75 for professional lawyers, scientists, doctors, and government officials and $ 500 for members of the NORD corporate council. For pharmaceutical, insurance, or other agents, registration is $ 650.

On the agenda is the opening discussion on the subject of “Patient-Professional Partnership” and includes three stories about the close bond between patients and their caregivers.

Breakout sessions for Saturday, June 26th, include “Coping with Graef and Anticipatory Grief”, “Shared Decision-Making with Your Care Team” and “Working While Rare”, followed by “Involving in Clinical Research: Finding” and Preparing for Clinical Trials, ”“ Navigating Insurance, Social Security Disability, and Patient Aid Programs, ”and“ The ABCs of Advocating Your Child’s Education ”in the second group of workshops.

This is followed by a plenary discussion on the subject of “Building resilience in a time of the unknown”. Speakers will examine how patients have coped while waiting for a diagnosis, how they fare while waiting for new treatments, and how they kept it together during the pandemic.

June 27th begins with an opening discussion in the plenum entitled “The Rare Sibling Experience”. Here, three siblings of rare disease patients will share their experiences, including how they became advocates.

Breakout sessions that day include “Fight Back and Fight Forward by Advocacy”, “Palliative Care: Unmasking the Myths”, “Rarely in the Family: Navigating the Roles of Patient, Parent, and Caregiver” in the early discussion groups. Later offerings this Sunday will include “Aging with a Rare Disease”, “Finding Your Community and Building Your Support Network” and “The Intersection of Race, Ethnicity and Equality with Access to Diagnosis and Treatment”.

The concluding plenary discussion, entitled “Rare Breakthroughs Now and on the Horizon”, will look at the latest advances in the diagnosis, treatment and care of rare diseases.

At the beginning of the year, NORD called on people to report on their practical experiences with rare diseases at the conference. A total of around 55 speakers will attend the conference, including doctors, nurses and other health professionals. Access to the virtual program will be provided by email during the week of the event.

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Never ignore these 6 signs in your pets



From Dr. Cynthia Maro

There are times when your pets are begging for extra treats, attention, or play time and it’s safe to ignore, but some signs that can start out as simple nuisances can be leading indicators of very serious health problems.

Knowing which signs require your attention and action can be life saving for your companion. The sooner you alert your veterinarian to these symptoms, the more likely they are to make a diagnosis and get your furry friend on the road to restoring health.

Below are some key indicators of illness.

1. Panting, Increased Breathing Rate, Open-Mouth Breathing: Panting can be a sign of pain, heat stroke, fever, or respiratory or cardiovascular problems.

A pet’s respiratory rate will increase as the need for oxygen increases, which can occur with all of the aforementioned diseases.

Cats always prefer to breathe through their nose. So if you breathe with your mouth open it is a sure sign of stress that can be the result of extreme stress, asthma, upper airway obstruction, heart or lung disease, or even cancer.

Increased respiratory rates also occur in infections that cause very high fevers or hyperthermia from heat stroke.

Wheezing that persists after a game of play and adequate rest should be taken seriously.

Conditions such as congestive heart failure, anemia, pneumonia, or pleural effusion (a condition where fluid fills the chest cavity and compresses the lungs) all need to be diagnosed through blood tests and x-rays.

All of these disorders can be life-threatening, and in cases such as heat stroke, immediate treatment through an emergency room visit is needed.

2. Salivation: This may be a sign of gastrointestinal discomfort, nausea, a foreign body in the mouth or throat, an oral tumor or infection, a sialocele (disorder of the salivary glands), a lymphoma or a tooth root abscess.

Diagnosis may include sedated oral inspection and x-rays.

3. Increased thirst: Thirst will increase slightly in hot weather or with an increase in salty snacks (think jerky, bully sticks, and rawhide). Prolonged increases in water consumption must be considered as it may be due to diabetes mellitus, diabetes insipidus, kidney disease or kidney failure, VBD (vector-borne disease, such as Lyme disease), an endocrine or hormonal imbalance such as Cushing’s disease or thyroid disease.

Diagnosis requires urinalysis, blood chemistry tests, and in some cases, more expensive hormone tests and ultrasounds.

4. Odor Change: Although pets can sometimes have an odor when it rains, a persistent or foul odor is often the first sign of illness.

“A smelly pet” can indicate something as small as a superficial skin or ear infection, or something much more serious, including an infected anal gland or a deep ear infection. These diseases can be treated very effectively by your veterinarian.

Some other worrying issues include odors from oral infections or tumors, deep skin infections, hormonal imbalances, diabetes, internal or external yeast or bacterial infections, anal gland narrowing, ulcerated skin tumors, or sinus infections.

5. Appetite Change: Lack of or increased appetite in pets should never be ignored.

Often times a pet has an increased appetite when they develop diabetes, but this sign can also be associated with certain types of cancer or tumors such as insulinoma, hyperthyroidism, Cushing’s disease, or adrenal cancer.

Pets often have a decreased appetite when battling infections, in pain, or having gastrointestinal disorders. The list of diseases that affect appetite is quite long.

6. Vomiting and diarrhea: Bowel discomfort or intermittent gastrointestinal symptoms (such as spitting once a week or even once a month) are signs that some part of the digestive process is not working properly.

Diagnoses such as intestinal parasites, food sensitivity, liver, gallbladder, and pancreatic diseases can all be treated with medication, but require a visit to the vet for appropriate treatment.

Your pet’s vet will know what tests to order to get insight into the cause of any of the signs mentioned.

If your fears of a negative or poor diagnosis are preventing you from taking action, please discuss this with your veterinarian. It’s always best to investigate early.

If you are concerned about high costs, your vet will want to know both your time and financial budget to care for your companion.

Not only can your quick attention to the warning signs of illness help your pet get better, but they can also reassure you, knowing that your companion will be comfortable, pain-free, and well-cared for.

Dr. Cynthia Maro is a veterinarian at Ellwood Animal Hospital in Ellwood City and Chippewa Animal Hospital in Chippewa Township. She writes a bi-weekly column on animal care and health issues. If you have a topic you’d like to address, email

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