Deidentifying and anonymizing patient data toward open access case reporting and case based reasoning analytics

Conversational learning transcripts from 2013-2022

2013:

This detailed guidance for De-identification of patient health information here: http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html may be a useful reference for the ethical committee. 

There has been a recent amendment to the HIPAA laws discussed here: http://www.securityblawg.com/

Going through the last discussion link i get the impression (which Rajib was perhaps trying to also initially suggest) that HIPAA patient privacy regulation could be more of an avenue toward big business gains for the US politico-legal nexus. We on the other hand are trying to apply an evidence based informational delivery system for better health care delivery to the developing world where people (as per HIFA) may be dying for the lack of health information. 

The above is still hypothetical and although HIPAA and its amendments may not be always relevant to our settings we would definitely need to maintain a good level of protection for our patients and further develop our own de-identification framework for their optimal benefit (as suggested by Tamoghna). 

On Sun, Jan 13, 2013 at 11:42 AM, Tamoghna wrote:

I would be advocating for maintaining data privacy and the absolute need for obtaining informed consent before sharing data.

I would also maintain that it should be upto the patient to decide the level of privacy he wants in his health records being shared. However, until we achieve that level of awareness among our patients about their legal rights, we need to take the onus on ourselves to see to it.(sounds paternalistic, but most of publicly funded healthcare in India works that way). HIPAA is not perfect, but it's the only standard we have at this moment.

Privacy is important in India, not for the insurance claims, but for the reason that disease associated stigma is more widely prevalent here than in the west. A diagnosis of HIV/TB/mental illness etc still carries a lot of unjustified stigma in urban India(I assume the picture is worse in rural India).

That makes it pertinent to stick to confidentiality guidelines while sharing data across the web.

From: Rajib Sengupta<>
Date: Sun, Jan 13, 2013 at 11:19 AM

In my opinion this privacy laws (HIPAA) etc done for some western country is really an artificial barrier.  Is there a similar law in India?My each and every information including my house is available openly in internet. May be in an insurance driven country the privacy etc makes sense. But in India, it just adds inefficiency in the process.. can we start a discussion about this? ... Can we disrupt this artificial barrier from India and may India will show the world a new way at looking at privacy when it comes to medical intervention where each hour is important?

2016:

Got back from casualty and cancelled a class so have some time to peck at these keys a bit more before lunch. Warning: long mail, cut short to the bottom line in PS to decide if you really need to read it. :-)

In response to Dr Rajeev's query/bottom-line: 

Lets say someone you know has diabetes (and lets say his age is 35 years). Could be a bit embarrassing for that person if it is attributed by his doctor to the trunkal obesity (which automatically would be interpreted by everyone as his own fault) but again as every other person currently has this it may not be a big deal? Now a few years down the line this person is unable to lose his trunkal obesity or his diabetes and also develops erectile dysfunction due to diabetes. The embarrassment level in having to share it with a collective may increase (people are even afraid to share it with their own doctor)?  Fine: still may not be necessary to protect this patient from his data (i emphasize on the ability of the collective to be able to figure out that this data belongs to this patient). Lets think this same patient develops HIV (from his insulin syringes that get inadvertently exchanged with someone, a long shot i know but then in medicine anything is possible) and now his employer notices that he gets regular free CD4 and HIV drugs (aka HAART) on his AADHAR ID from the Govt ART center ( govt benefits) and decides to fire him...

With the above anecdote (possibly generalize-able)  my contention is just that this is a wicked problem that needs more deliberation before we jump the gun on using the aadhar as a UHID. 

Again i may be missing something and would like to be guided by the collective here. Meanwhile here's http://missinglink.ucsf.edu/lm/ethics/Content%20Pages/fast_fact_auton_bene.htm, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881979/  some general reading on this topic. 

best, 

rb

PS: Missed the other important analogy brought out by Dr Rajeev of correlating health information with financial information. This is tricky and may be reviewed in the manner below?: 

The govt gets to know that certain bank account numbers (de-identified) have a huge sum of money in Swiss banks and yet as they are de-identified they are unable to do anything about it. However all they need to do (if they feel this is important to the collective majority of Indian population) is to approach the bank manager and ask for the name? This may be analogous to what they can do by approaching the patient's doctor in special case scenarios where they are sure that a given individual patient's health i e Ebola is hazardous to the collective and this person needs to be quarantined and cared for in a special manner. 

My current Bottom-line: The health information of an individual should be the collective responsibility of that person's doctor (who should be identifiable) and the patient (who should be de-identified to protect his autonomy) and yet the data can be used (after de-dentification) to enrich science. 

On Wed, Aug 10, 2016 at 11:57 AM, rajeev joshi wrote:

Dear Dr Rakesh,

One of the uses of aadhar linked services is to give benefits to appropriate individual and avoid monetary losses to agents. 

In that connection de-identification of person is not considered as important issue. This is an example of non-health use of UID.

Now about patient specific information. From society point of view, in case of epidemic of infectious diseases, identification

of index case, its isolation and subsequent treatment and result thereof are also important issues, where de-identification is

not all that important. In fact immediate neighbours of the patient affected with infectious disease MUST be aware of sickness.

As far patient being identifiable to government, I do not think there should be much problem, as finally government is supposed

to give healthcare related benefits to the patients in case of epidemics as well as natural disasters. At such times, information

regarding patient must be available to government agencies taking care of the patient.

There is one more possibility which is being attempted by one organization in Pune, which is eHealth Card. Unless and untill

the card is not swiped, the information is not available to doctor. But does it not add one more hurdle in imparting healthcare?

Or it would protect identity of the patient's information in same manner as our financial information is protected by use of

Debit Card. And how many stories we read about money being withdrawn from ATM machines illegally without ATM cards?

Would health data be all that secure and is it all that necessary?

Rajeev

From: Rakesh Biswas 
To: IAMI_Members

Thanks Prof Moidu, 

The question is should the society set the level of patient privacy for an individual patient? :-)

I guess when a patient seeks his/her healthcare traditionally s/he would approach a doctor and transfers a lot of his/her personal details for the express usage of the doctor (for his/her own good)? While the doctor as an individual, becomes accountable here for safeguarding the patient's privacy can we expect collective-society to demonstrate the same amount of accountability?

I am sure if we had a good governance and good-society as a collective these questions wouldn't have arisen. :-)

Dr Rajeev's email just came in as i was composing this one and i agree that we need a workaround or center-point to accommodate for this need to identify an individual (to save the collective). Perhaps we need to identify the doctor and tag him to his patients (who may not be identifiable) and hold the doctor accountable if s/he doesn't report some of the situations where collective knowledge about the individual would save many more people (perhaps this is what was standard practice anyway)?

Sorry to send this off in a hurry without reading it twice. Have to rush to the casualty now. 

best, 

rb

On Wed, Aug 10, 2016 at 11:47 AM, K. Moidu, MD, PhD 

Rakesh:

Having an ID  does not expose or secure your data in terms of privacy.

An ID is for identification, it should be common, constant, and consistent.

Access to data can be secured and should be secured to the extent a society sets a level of Privacy.

However,  while you can expect Privacy do not expect anonymity.

You perhaps had a higher concern.  Perhaps I did not get your comment as you intended.  Do repeat and clarify where I deviated.

//km

 

On Wed, Aug 10, 2016 at 11:33 AM, Rakesh Biswas wrote:

Just wanted to share a different view point: 

Would it be safer to use a universal patient life-time-EHR identifier UHID such that patient confidentiality and privacy is controlled solely by the patient and hidden even from the Govt (who it is assumed will always look after the patient but any system can be fallible at times)?

Having an AADHAR ID as UHID (let me know if i missed something here) may still make the patient identifiable to the Govt (and may not always be in the best interest of individual patient autonomy)? 

Would it be safer to have a de-identified patient ID that is solely controlled by the patient? The patient can just choose a code name from a names data base and utilize it for all his/her transactions through the EHR? Please correct me if i missed something here. 

best, 

rb  

2022/8/31, 11:41 AM 

Sanjana: 

https://hai.stanford.edu/news/de-identifying-medical-patient-data-doesnt-protect-our-privacy

This article highlights how de-identified data can always be re-identified and how this is not a perfect way of patient data protection. However, it is preferred to anonymity as we need it for research

[8/31, 11:42 AM] Sanjana 2019 batch : 

Quoted: 

"Shah says health record data should be kept private in the same way it is kept private when used by a patient’s medical team. “If we’re not worried when the doctor sends our detailed records to our physical therapist or nutritionist to provide care today, we should be OK with allowing it to be used for purposes that could improve our care in the future,” he says.

It’s also a matter of contributing to the common good, he says. “If I want to benefit from someone else’s data, I have a duty to also share my own.”"

[8/31, 11:45 AM] Avinash Gupta Nepal:

 Some ways of privacy protection are easy to crack, some are hard. 

May vary case to case basis also. 

I believe we are doing enough De-identifiication which can be considered as strong privacy protection except the fact that when case records begin, the patient is present somewhere in hospital (something where our *weakest link* is) and later when patient discharge it can again be found if someone gets access to paper records  or digital billing records or digital lab records ( *hack*) .

[8/31, 11:50 AM] Avinash Gupta Nepal: 

We follow hipaa to learn and do De-identifiication and also checked with disha. Waited for PDP bill but it's not out yet neither any equivalent. The image shown here had been posted in hospital for learners to not miss anything and also we have been always actively auditing every case to prevent errors and correct ASAP. 

https://classworkdecjan.blogspot.com/2017/11/de-identifying-patient-data.html

[8/31, 11:50 AM] Avinash Gupta Nepal: The image shown here was made by me in 2017