Patient Choice - Revision history

Tomjones: /* Problems */

2021-10-01T01:41:58Z

Problems

← Older revision		Revision as of 01:41, 1 October 2021
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	* In the US on 2020-02-20 data sharing is not based on FHIR standards but an older document exchange protocol that has little control and operates with no transparency to the patient. This Reddit post shows [https://www.reddit.com/r/privacy/comments/f5j7ad/your_doctors_are_sharing_your_private_health/ Your doctors are sharing your private health information to the state and feds (and it's not a HIPPA violation!)]		* In the US on 2020-02-20 data sharing is not based on FHIR standards but an older document exchange protocol that has little control and operates with no transparency to the patient. This Reddit post shows [https://www.reddit.com/r/privacy/comments/f5j7ad/your_doctors_are_sharing_your_private_health/ Your doctors are sharing your private health information to the state and feds (and it's not a HIPPA violation!)]
	* Also a threat is [https://medcitynews.com/2021/04/some-proposed-hipaa-changes-could-inadvertently-expose-the-data-its-supposed-to-protect/?rf=1 Some proposed HIPAA changes could inadvertently expose the data it’s supposed to protect]. <blockquote>One of the changes involves allowing patients to receive their medical information via personal health applications — smartphone apps, for example — which are often developed and operated by third-party technology companies. But these companies are generally not governed by HIPAA, opening up patient health data to potential misuse. “The patient isn’t the only one getting the information in that situation, and so you wind up exposing information to tech platforms, app developers and others. That exposed information can then be shared with data brokers who create profiles on individuals, which can be used for potentially nefarious purposes. For example, it creates a gating opportunity where some people may get certain opportunities based on those profiles, and others are barred from those same opportunities. That’s according to Laura Hoffman, assistant director of federal affairs at the American Medical Association,</blockquote>		* Also a threat is [https://medcitynews.com/2021/04/some-proposed-hipaa-changes-could-inadvertently-expose-the-data-its-supposed-to-protect/?rf=1 Some proposed HIPAA changes could inadvertently expose the data it’s supposed to protect]. <blockquote>One of the changes involves allowing patients to receive their medical information via personal health applications — smartphone apps, for example — which are often developed and operated by third-party technology companies. But these companies are generally not governed by HIPAA, opening up patient health data to potential misuse. “The patient isn’t the only one getting the information in that situation, and so you wind up exposing information to tech platforms, app developers and others. That exposed information can then be shared with data brokers who create profiles on individuals, which can be used for potentially nefarious purposes. For example, it creates a gating opportunity where some people may get certain opportunities based on those profiles, and others are barred from those same opportunities. That’s according to Laura Hoffman, assistant director of federal affairs at the American Medical Association,</blockquote>
	* Part of the problem is that sometimes the health services themselves pass patient records to app developers. For example the article [https://techcrunch.com/2021/09/30/uk-class-action-style-suit-filed-over-deepmind-nhs-health-data-scandal/ UK class action-style suit filed over DeepMind NHS health data scandal] describes live patient information passed from the UK NHS to a small developer and Google Deep Mind for development purposes.		* Part of the problem is that sometimes the health services themselves pass patient records to app developers. For example the article [https://techcrunch.com/2021/09/30/uk-class-action-style-suit-filed-over-deepmind-nhs-health-data-scandal/ UK class action-style suit filed over DeepMind NHS health data scandal] describes live patient information passed from the UK NHS to a small developer and Google Deep Mind for development purposes. (2021-09-30)

	==Solutions==		==Solutions==

Tomjones: /* Problems */

2021-10-01T01:41:06Z

Problems

← Older revision		Revision as of 01:41, 1 October 2021
Line 39:		Line 39:
	* In the US on 2020-02-20 data sharing is not based on FHIR standards but an older document exchange protocol that has little control and operates with no transparency to the patient. This Reddit post shows [https://www.reddit.com/r/privacy/comments/f5j7ad/your_doctors_are_sharing_your_private_health/ Your doctors are sharing your private health information to the state and feds (and it's not a HIPPA violation!)]		* In the US on 2020-02-20 data sharing is not based on FHIR standards but an older document exchange protocol that has little control and operates with no transparency to the patient. This Reddit post shows [https://www.reddit.com/r/privacy/comments/f5j7ad/your_doctors_are_sharing_your_private_health/ Your doctors are sharing your private health information to the state and feds (and it's not a HIPPA violation!)]
	* Also a threat is [https://medcitynews.com/2021/04/some-proposed-hipaa-changes-could-inadvertently-expose-the-data-its-supposed-to-protect/?rf=1 Some proposed HIPAA changes could inadvertently expose the data it’s supposed to protect]. <blockquote>One of the changes involves allowing patients to receive their medical information via personal health applications — smartphone apps, for example — which are often developed and operated by third-party technology companies. But these companies are generally not governed by HIPAA, opening up patient health data to potential misuse. “The patient isn’t the only one getting the information in that situation, and so you wind up exposing information to tech platforms, app developers and others. That exposed information can then be shared with data brokers who create profiles on individuals, which can be used for potentially nefarious purposes. For example, it creates a gating opportunity where some people may get certain opportunities based on those profiles, and others are barred from those same opportunities. That’s according to Laura Hoffman, assistant director of federal affairs at the American Medical Association,</blockquote>		* Also a threat is [https://medcitynews.com/2021/04/some-proposed-hipaa-changes-could-inadvertently-expose-the-data-its-supposed-to-protect/?rf=1 Some proposed HIPAA changes could inadvertently expose the data it’s supposed to protect]. <blockquote>One of the changes involves allowing patients to receive their medical information via personal health applications — smartphone apps, for example — which are often developed and operated by third-party technology companies. But these companies are generally not governed by HIPAA, opening up patient health data to potential misuse. “The patient isn’t the only one getting the information in that situation, and so you wind up exposing information to tech platforms, app developers and others. That exposed information can then be shared with data brokers who create profiles on individuals, which can be used for potentially nefarious purposes. For example, it creates a gating opportunity where some people may get certain opportunities based on those profiles, and others are barred from those same opportunities. That’s according to Laura Hoffman, assistant director of federal affairs at the American Medical Association,</blockquote>
			* Part of the problem is that sometimes the health services themselves pass patient records to app developers. For example the article [https://techcrunch.com/2021/09/30/uk-class-action-style-suit-filed-over-deepmind-nhs-health-data-scandal/ UK class action-style suit filed over DeepMind NHS health data scandal] describes live patient information passed from the UK NHS to a small developer and Google Deep Mind for development purposes.

	==Solutions==		==Solutions==

Tomjones: /* Last updated */

2021-09-30T00:54:05Z

Last updated

← Older revision		Revision as of 00:54, 30 September 2021
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	The Federated Identifiers for Resilient Ecosystems Work Group of the Kantara Initiative.		The Federated Identifiers for Resilient Ecosystems Work Group of the Kantara Initiative.
	=== Last updated===		=== Last updated===
	~~2020~~-04-20 (~~types of access~~)		2021-04-30 (HIPAA changes can introduce new threats)

	==Context==		==Context==

Tomjones: /* Other functionality that a device app could supply */

2021-05-19T04:51:08Z

Other functionality that a device app could supply

← Older revision		Revision as of 04:51, 19 May 2021
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	===Other functionality that a device app could supply===		===Other functionality that a device app could supply===
	# The app could be used by a medical record source to determine which categories of medical records the patient wants to share with other HIPAA covered entities.		# The app could be used by a medical record source to determine which categories of medical records the patient wants to share with other HIPAA covered entities.
	# The app could respond to requests by an EHR for current information, ~~with~~ with the data is held by the user, or by forwarding the request to the source EHR.		# The app could respond to requests by an EHR for current information, with the data is held by the user, or by forwarding the request to the source EHR.
	# The patient or legal system can enable guardians to use the app for access or update of patient data.		# The patient or legal system can enable guardians to use the app for access or update of patient data.

Tomjones: /* Problems */

2021-04-30T16:48:52Z

Problems

← Older revision		Revision as of 16:48, 30 April 2021
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	* A [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6371412/ recent evaluation of the security of health apps on smartphones] revealed the following: "We identified 116 eligible mobile phone apps. Of those, 4% (5/116) received a transparency score of acceptable, 28% (32/116) questionable, and 68% (79/116) unacceptable. Only a minority of the apps (49%) had a privacy policy." Clearly leaving security up to app developers without verification is not working today.		* A [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6371412/ recent evaluation of the security of health apps on smartphones] revealed the following: "We identified 116 eligible mobile phone apps. Of those, 4% (5/116) received a transparency score of acceptable, 28% (32/116) questionable, and 68% (79/116) unacceptable. Only a minority of the apps (49%) had a privacy policy." Clearly leaving security up to app developers without verification is not working today.
	* In the US on 2020-02-20 data sharing is not based on FHIR standards but an older document exchange protocol that has little control and operates with no transparency to the patient. This Reddit post shows [https://www.reddit.com/r/privacy/comments/f5j7ad/your_doctors_are_sharing_your_private_health/ Your doctors are sharing your private health information to the state and feds (and it's not a HIPPA violation!)]		* In the US on 2020-02-20 data sharing is not based on FHIR standards but an older document exchange protocol that has little control and operates with no transparency to the patient. This Reddit post shows [https://www.reddit.com/r/privacy/comments/f5j7ad/your_doctors_are_sharing_your_private_health/ Your doctors are sharing your private health information to the state and feds (and it's not a HIPPA violation!)]
			* Also a threat is [https://medcitynews.com/2021/04/some-proposed-hipaa-changes-could-inadvertently-expose-the-data-its-supposed-to-protect/?rf=1 Some proposed HIPAA changes could inadvertently expose the data it’s supposed to protect]. <blockquote>One of the changes involves allowing patients to receive their medical information via personal health applications — smartphone apps, for example — which are often developed and operated by third-party technology companies. But these companies are generally not governed by HIPAA, opening up patient health data to potential misuse. “The patient isn’t the only one getting the information in that situation, and so you wind up exposing information to tech platforms, app developers and others. That exposed information can then be shared with data brokers who create profiles on individuals, which can be used for potentially nefarious purposes. For example, it creates a gating opportunity where some people may get certain opportunities based on those profiles, and others are barred from those same opportunities. That’s according to Laura Hoffman, assistant director of federal affairs at the American Medical Association,</blockquote>

	==Solutions==		==Solutions==

Tomjones: /* Context */

2021-04-30T16:44:30Z

Context

← Older revision		Revision as of 16:44, 30 April 2021
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	==Context==		==Context==
	* For more context see the wiki page [[Native Apps for US Healthcare]].		* For more context see the wiki page [[Native Apps for US Healthcare]] which looks at the apps that control access to user secrets in hardware. This page considers web apps as well.
	* The major context for this page is an environment where user's private data is treated like a commodity to be bought and sold. These two postings in the Sunday New York Times on 2020-01-26 demonstrate conclusively that a [[Trustworthy Healthcare Ecosystem]] requires more attention to the handling of healthcare data that is common at this time:		* The major context for this page is an environment where user's private data is treated like a commodity to be bought and sold. These two postings in the Sunday New York Times on 2020-01-26 demonstrate conclusively that a [[Trustworthy Healthcare Ecosystem]] requires more attention to the handling of healthcare data that is common at this time:
	** The report on '''The Secretive Company That Might End Privacy as we Know it''' received more reader attention than any reports on the Impeachment trial of the President or even the tribulations of the Duke and Duchess of Sussex.		** The report on '''The Secretive Company That Might End Privacy as we Know it''' received more reader attention than any reports on the Impeachment trial of the President or even the tribulations of the Duke and Duchess of Sussex.

Tomjones: /* Context */

2021-04-30T16:42:30Z

Context

← Older revision		Revision as of 16:42, 30 April 2021
Line 7:		Line 7:

	==Context==		==Context==
			* For more context see the wiki page [[Native Apps for US Healthcare]].
	* The major context for this page is an environment where user's private data is treated like a commodity to be bought and sold. These two postings in the Sunday New York Times on 2020-01-26 demonstrate conclusively that a [[Trustworthy Healthcare Ecosystem]] requires more attention to the handling of healthcare data that is common at this time:		* The major context for this page is an environment where user's private data is treated like a commodity to be bought and sold. These two postings in the Sunday New York Times on 2020-01-26 demonstrate conclusively that a [[Trustworthy Healthcare Ecosystem]] requires more attention to the handling of healthcare data that is common at this time:
	** The report on '''The Secretive Company That Might End Privacy as we Know it''' received more reader attention than any reports on the Impeachment trial of the President or even the tribulations of the Duke and Duchess of Sussex.		** The report on '''The Secretive Company That Might End Privacy as we Know it''' received more reader attention than any reports on the Impeachment trial of the President or even the tribulations of the Duke and Duchess of Sussex.

Tomjones: /* Solutions */

2021-02-18T01:28:01Z

Solutions

← Older revision		Revision as of 01:28, 18 February 2021
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	==Solutions==		==Solutions==
	The patient is not accustomed to having a choice in their health as the insurance market has dictated that for decades. There are two obstacles to overcome to provide real choice to any consumer.		The patient is not accustomed to having a choice in their health as the insurance market has dictated that for decades. There are two obstacles to overcome to provide real choice to any consumer.
	# The patient must learn that they have a choice. Even though the 21st Century Cares Act gives them choice, it is not enforceable until October 2020.		# The patient must learn that they have a choice. Even though the 21st Century Cares Act gives them choice, it is not enforceable until October 2020 since extended to October 2021..
	# The patient must have easy access to clear data to make a choice. In particular the effectiveness and out-of-pocket cost of any procedure or medicine. This will probably be decided in a hit-or-miss approach unless some real user research can be done.		# The patient must have easy access to clear data to make a choice. In particular the effectiveness and out-of-pocket cost of any procedure or medicine. This will probably be decided in a hit-or-miss approach unless some real user research can be done.
	* The computer industry has learned that security cannot be a choice and has taken the responsibility to assure that their software does not expose the user to exploits that are launched regularly from any site that has access to the internet.		* The computer industry has learned that security cannot be a choice and has taken the responsibility to assure that their software does not expose the user to exploits that are launched regularly from any site that has access to the internet.

Tomjones: /* Other Material */

2020-05-26T18:02:18Z

Other Material

← Older revision		Revision as of 18:02, 26 May 2020
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	==References==		==References==

			* [https://www.ga4gh.org/wp-content/uploads/GA4GH-Final-Revised-Consent-Policy_16Sept2019.pdf Global Alliance for Genomics and Health: Consent Policy]

	===Other Material===		===Other Material===

Tomjones: /* Solutions */

2020-05-05T19:43:04Z

Solutions

← Older revision		Revision as of 19:43, 5 May 2020
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	The patient is not accustomed to having a choice in their health as the insurance market has dictated that for decades. There are two obstacles to overcome to provide real choice to any consumer.		The patient is not accustomed to having a choice in their health as the insurance market has dictated that for decades. There are two obstacles to overcome to provide real choice to any consumer.
	# The patient must learn that they have a choice. Even though the 21st Century Cares Act gives them choice, it is not enforceable until October 2020.		# The patient must learn that they have a choice. Even though the 21st Century Cares Act gives them choice, it is not enforceable until October 2020.
	# The patient must have easy access to clear data to make a choice. In particular the effectiveness and out-of-pocket cost of any procedure or medicine. This will probably be decided in a hit-or-miss approach unless ~~come~~ real user research can be done.		# The patient must have easy access to clear data to make a choice. In particular the effectiveness and out-of-pocket cost of any procedure or medicine. This will probably be decided in a hit-or-miss approach unless some real user research can be done.
	* The computer industry has learned that security cannot be a choice and has taken the responsibility to assure that their software does not expose the user to exploits that are launched regularly from any site that has access to the internet.		* The computer industry has learned that security cannot be a choice and has taken the responsibility to assure that their software does not expose the user to exploits that are launched regularly from any site that has access to the internet.
	* If the patient is to have a choice about the release of their protected health information (PHI), they must be able to rely on the software that is installed on the healthcare providers computers as well as any software that they use on their own computers.		* If the patient is to have a choice about the release of their protected health information (PHI), they must be able to rely on the software that is installed on the healthcare providers computers as well as any software that they use on their own computers.