When was the definition of health?
When was the definition of health? – Why A Holistic Definition Of Health Is More Useful To Our Family
It usually starts as an innocent question in an attempt to make friendly conversation with my husband, Jared, and me.
“So, how’s Jared? How’s his health?”
Those who ask this question are often aware that Jared has hemophilia B and a seizure disorder. But not everyone knows how these conditions affect him, much less how he manages them.
“Pretty stable,” I usually reply.
What having stable health means
“Stable” means nothing has really changed regarding Jared’s conditions. He still has bleeding episodes every month or so. He occasionally has seizures, especially on heavy emotional days. Thankfully, his current meds are much better at keeping attacks in check than the previous ones were.
Hemophilia is unpredictable by nature, making it impossible for us to know which body part will bleed next. The best we can do is be prepared for any possibility and learn to manage everyday life with temporary hiccups. This involves adjusting expectations and goals depending on Jared’s capacity on a particular day.
Sometimes Jared can do a lot. On a good day, he can lift 100-pound weights, prepare a three-course meal for our family, and work more than eight hours. But on a bad day, he might be confined to his bed, immobile for three days to a week and unable to concentrate on work. On those days, he plays hand-held games to distract from the pain of a bleed.
Stable is the best it can get
I’d hate to let anyone down, but having stable health is the best we can ask for. Unless a new treatment comes along to help him stay bleed-free for longer periods of time, he’ll likely continue to have bleeds every month.
Should prophylactic doses of factor finally become available — and affordable — in the Philippines, where we live, Jared might have a shot at enjoying a bleed-free year. But for now, that remains a pipe dream.
Monthly bleeds are his normal. They’re the baseline from which we gauge the state of his health.
As long as the frequency of his bleeds stays roughly the same and he doesn’t have the “bad” kind of bleeds more often, we see no reason to worry.
What is a more holistic definition of health?
In the past, health was equated to the absence of infirmity or disease. It’s a definition I personally find limiting, as it dismisses the subjective experience of people with chronic illnesses who don’t fall within this category but can still live happy and fulfilling lives with the aid of modern medicine.
In 1948, the World Health Organization proposed a definition of health as “a state of complete physical, mental, and social well-being, not merely the absence of infirmity or disease.” While some have criticized this definition as impractical, I agree with it.
Jared doesn’t check all three of those boxes daily, but he does like to tell me that, all things considered, he’s happy with his life. After all, being born with hemophilia means that he has no other life to compare his current one with. He’s never experienced the kind of life most people would call “healthy,” so he can’t know if it would be any better than the life he’s living now.
In some ways, I think Jared’s health is better than it used to be. He’s gotten much better at self-infusion, and I’ve seen his confidence levels rise because of it. Learning to treat himself has been liberating, as he no longer needs to depend on others for his treatment. He’s able to work full time, and he’s about to start a new business. He has a family that loves him and the support of good friends.
Holistically speaking, he might be doing quite well.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
‘Shut It Off Immediately’: The Health Industry Responds To Data Privacy Crackdown
A series of federal data privacy crackdowns is chilling the growing market for online medicine and mental health services.
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The Federal Trade Commission has led the way in the new enforcement push, fining telehealth companies for violating their customers’ privacy and barring them from doing so in the future. The director of HHS’ Office for Civil Rights said her staff has launched its own investigation, calling online health data collection “problematic” and “widespread.” The agency also recently sought to update health data privacy protections to bar providers and insurers from releasing information about a patient seeking or obtaining a legal abortion.
That’s upending longstanding business practices and sending the health care industry scrambling. Firms are in some cases cutting ties with tech giants like Google and Facebook as they try to understand the regulatory landscape and measure the fallout to their bottom lines.
For consumers, health care industry experts said, the shift offers more privacy, but could also make it more difficult to find primary care, mental health and other medical services online.
“Legal and compliance teams … are telling the marketing team that these tools are dead men walking, you need to shut it off immediately,” said Ray Mina, head of marketing at Freshpaint, a San Francisco firm that provides software to health care firms for managing customer marketing data.
The backdrop for this new concern is a rising trend of Americans receiving information or services from mental health apps, telehealth services and hospital websites. People may not know these services are capturing detailed personal information that is then used for marketing and advertising.
Now, as regulators set new limits on how this data is used and shared, Mina said clients have swamped his firm with questions about what data it’s collecting and with whom it is sharing it. So Freshpaint has to ensure it doesn’t run afoul of the regulators.
It’s a seismic shift for the industry that’s playing out in the numbers.
In the first three months of 2023, telemedicine firms spent a quarter of what they did on targeted Facebook and Google ads during the same period last year, according to data from MediaRadar, an ad industry intelligence platform. Meanwhile, MediaRadar data shows nonprofit health systems also halved their spending on targeted ads during that same three-month period year-over-year.
HIPAA and its limits
Until recently, much of the health data online — picked up in searches, by websites, apps and wearables — was thought to be outside the government’s purview. The federal health data privacy law, HIPAA, only covers patient data collected by insurers and health care providers, like doctors or hospitals.
Collecting data consumers leave online, and using it to market products, is a key mechanism for reaching customers that executives are now fretting about.
Last year, lawmakers proposed broad data privacy legislation, but Congress didn’t pass it. Agencies from HHS to the FTC are trying to expand data protections anyway, arguing that existing authorities provide them the power to do so, even though they haven’t used those authorities to broadly protect health data in the past.
HHS’ Office for Civil Rights surprised insurers and health care providers in December when it issued a bulletin expanding its definition of personally identifiable health information and restricting the use of certain marketing technology.
The office warned that entities covered by HIPAA aren’t allowed to wantonly disclose HIPAA-protected data to vendors or use tracking technology that would cause “impermissible” disclosures of protected health information.
That protected data can include email addresses, IP addresses, or geographic location information that can be tied to an individual, under HHS’ 22-year-old HIPAA privacy rule.
“We’re seeing people go in and type symptoms, put in information, and that information is being disclosed in a way that’s inconsistent with HIPAA and being used to potentially track people, and that is a problem,” said HHS Office for Civil Rights Director Melanie Fontes Rainer at the International Association of Privacy Professionals’ summit in Washington this month.
Meanwhile, in February, the Federal Trade Commission said it had fined prescription discount site and telehealth provider GoodRx $1.5 million for sharing customer data with Google, Facebook and other firms.
The FTC’s principle power allows it to police “unfair and deceptive” practices and GoodRx had told customers it would not share their data, and misled them into thinking their records were safe under HIPAA, the agency said.
But the FTC also cited a violation of its health breach notification rule, which says that entities not covered by HIPAA that collect personally identifiable health information must tell consumers when there’s been a breach of their data. The agency had never used the rule, which was previously considered a cybersecurity enforcement tool, as a stick to wield against companies that knowingly shared customer data with business partners.
The agency said to expect similar enforcement to come and last month fined online therapy provider BetterHelp $7.8 million for sharing customer data after telling patients it would not.
“Firms that think they can cash in on consumers’ health data because HIPAA doesn’t apply should think again,” said Samuel Levine, director of the FTC’s Bureau of Consumer Protection. “Our recent actions against GoodRx and BetterHelp make clear that we are prepared to use every tool to protect Americans’ health privacy, and hold accountable those who abuse it.”
In both of the cases, the FTC required the firms to change their data protection practices and to halt sharing customer information. Both companies settled their cases, but denied wrongdoing.
GoodRx said in a statement that it “had used vendor technologies to advertise in a way that we believe was compliant with all applicable regulations and that remains common practice among many health, consumer and government websites.”
BetterHelp said in a statement that it was accused of using “limited, encrypted information to optimize the effectiveness of our advertising campaigns so we could deliver more relevant ads and reach people who may be interested in our services.”
The company suggested that it had been unfairly singled out, since “this industry-standard practice is routinely used by some of the largest health providers, health systems, and healthcare brands.”
Everyone from online telehealth providers to major hospital systems is taking notice.
“They’re taking a look at anything that looks like a marketing operation that sits on their website and they’re pulling back from it until they get more guidance from HHS,” said Anna Rudawski, a partner at law firm Norton Rose Fulbright who advises health care organizations on data protection.
Measuring the fallout
Data privacy advocates are urging the regulators on, arguing that health information deserves special protections and that enforcement needs to evolve now that the world has moved online. They expect companies can adjust.
“Advertising does not have to be privacy-invasive to be valuable or effective,” said Cobun Zweifel-Keegan, managing director of the Washington office of the International Association of Privacy Professionals.
And the industry is hardly putting up a united front in response.
Lartease Tiffith, the executive vice president for public policy at the Interactive Advertising Bureau, a trade group for online advertising firms, for example, said that recent enforcement actions target companies that explicitly misrepresented their data privacy policies by not telling customers they were sharing information about them with third parties.
“If you tell consumers, we’re not going to do X, and you do X, that’s a problem,” he said. “I don’t think it has anything to do with our industry.”
But some health care executives aren’t so sure. “This has been the reason that my CEO can’t sleep at night,” said a lawyer for a telehealth company whom POLITICO granted anonymity so as not to draw attention to their client.
Rudawski said risk-averse health care organizations are discontinuing advertising with major platforms like Google and Facebook until the new regulatory environment is clearer.
And Brett Meeks, executive director of the Health Innovation Alliance, which represents providers, insurers, and others on health technology matters, said that health systems want to follow the rules, but were not prepared for the abrupt policy changes. “It’s hard to follow rules that change with little notice,” he said.
Others may be trying to avoid the fines and remedies imposed on GoodRx and BetterHelp with preemptive action.
Online telehealth provider Cerebral, which is under federal investigation for allegedly overprescribing controlled substances and, reportedly, for violating privacy regulations, recently filed a data breach notification with HHS, citing its December guidance.
“Cerebral determined that it had disclosed certain information that may be regulated as protected health information under HIPAA to certain Third-Party Platforms and some Subcontractors without having obtained HIPAA-required assurances,” the firm said in the notice, which it also sent to 3.18 million patients and others who visited its website or used its app.
At the same time, the company told customers it hadn’t done anything unusual by tracking their clicks and sharing that information with other businesses, calling it standard practice “in many industries, including health systems, traditional brick and mortar providers, and other telehealth companies.”
In a statement, Cerebral said that the new HHS guidance marked a sea change for the health care industry because it said that “all data — including the submission of basic user contact information — gathered from a healthcare entity’s website or app should be treated as [protected health information]” under HIPAA.
A number of other health care organizations not previously known to be in regulators’ sights have also submitted breach reports this year, acknowledging that web trackers they’d employed had collected patient data. New York-Presbyterian Hospital, UC San Diego Health and alcohol recovery telehealth company Monument filed breach reports last month; Brooks Rehabilitation did so in January.
Still other firms are taking a wait-and-see approach, hoping for more guidance from both the FTC and HHS.
An executive at a telehealth company, who spoke on the condition of anonymity so as not to draw attention to his firm, said he doesn’t take issue with the FTC’s actions or the HHS guidance, but is concerned it could lead to more restrictive privacy guidance that directly interferes with standard advertising practices.
“That would suddenly create real challenges for companies to market their services, which if their company is doing something good in the world, you want their services marketed. So how do you balance?” he asked.
Washington State Lawmakers Pass Bill To Protect Privacy Of Consumer Health Data
Washington state lawmakers finalized passage of a bill Monday that provides privacy protections for consumer health data.
The bill protects health data collected by consumer apps and websites, which is not covered by federal regulations, and is headed to Washington Gov. Jay Inslee for his signature.
The legislation has special urgency as many states pass prohibitions against abortion and seek to limit women from obtaining them elsewhere, according to Rep. Vandana Slatter (D-Redmond), the bill’s sponsor who spoke to GeekWire in an earlier interview. Period tracking apps, for instance, can disclose information about abortions or miscarriages, and the new law would shield such data.
“Websites, apps and health tracking devices lack the basic protections we’ve come to expect when sharing our personal health data,” said Rep. Slatter in a statement Monday. “There is no way to consent or even know about it. We must protect the data of Washingtonians and all who travel here. Without a federal policy, this is where we are and the first in the nation bill we need.”
Cher Scarlett, a Seattle-area software engineer and worker’s rights activist who testified in favor of the bill, celebrated its passage. “This is an enormous victory for not only Washington state, but the entire nation,” Scarlett said in an email to GeekWire.
The bill, HB1155, passed the state House 57-40 in March and the Senate 27-21 on April 5. The house agreed to the amendments Monday. The law, called the My Health, My Data Act, will:
- Prohibit the sharing and collection of health data without consent in Washington state.
- Require distinct privacy policies that disclose how personal health data is used by entitities that collect it.
- Require prior authorization for companies to sell sensitive health data to third parties.
- Guarantee the right of Washingtonians to withdraw consent and request deletion of their health data.
- Prohibit “geofencing” around health care facilities to identify or track consumers seeking healthcare services or send messages related to health.
Some of the amendments to the bill weakened its privacy protections compared to the original version, said Scarlett. Location data was originally fully protected, but the final bill allows imprecise location data within a 1,750-foot radius to be collected and sold, she said.
The bill also originally included “use or purchase of medications” under the definition of consumer health data, but that was changed to the narrower term “prescribed medication.”
Protected reproductive and health services data, however, did specifically retain broader privacy protections for “medication,” said Scarlett. And even for non-reproductive services, the purchase of all medications is protected if the information is used to infer health status, said Slatter.
RELATED: Privacy bill aims to protect health data on apps and websites in Washington state
An analysis by STAT News and The Markup showed that many direct-to-consumer telehealth companies share sensitive medical data with large advertising platforms. Trackers that collected medical intake data were present on 13 of the 50 websites assessed, and all but one shared URLs that people visited and their IP addresses.
The My Health, My Data Act was requested by Washington state attorney general Bob Ferguson and can be enforced by his office or by Washingtonians bringing their own civil lawsuits.
“This law provides Washingtonians control over their personal health data,” Ferguson said in a statement. “Washingtonians deserve the right to decide who shares and sells their health data, and the freedom to demand that corporations delete their sensitive health data — and will now have these protections.”
Editor’s note: This story was updated with information about an amendment defining consumer health data.
