Increasingly, hospitals give patients electronic access to parts of the electronic medical record, i.e. the physician's conclusions at the end of a visit, new test results etc. In addition,  patients  can request access to all the evaluation and treatment information that pertains to them. They are also the ones that can pass this information on to others, something that the physician or the hospital cannot do (with some legally defined exceptions). All this is part of the notion that there is an ethical obligation to empower the patients and to respect their right to control what happens to them . Thus, the ethical issue may be one of patient empowerment rather than "ownership".

I think u need to visit this link for the answer http://www.mciindia.org/RulesandRegulations/CodeofMedicalEthicsRegulations2002.aspx

Moreover there was a recent order from Ministry of law informing all hospitals to handover the case files to the patient if he/she requires the same.( i dont have a copy of that)

Pavithran, your comment was pretty useful as I see another country [India] as well practices a similar policy. I skimmed over the website to see if the regulations were adopted from some international authorities' policies, but I could not find any. It appears to me that the Indian regulations are applicable to India, and they were not a part of a global consensus. So, I would still appreciate any information on global policies as well as information on other countries.

In Canada, the doctor or the institution in which the doctor works owns the patient file. The patient is allowed access as long as the doctor is of the opinion that nothing in the file will be harmful to the patient's health. The patient can copy the file at his/her own expense. Sometimes there are items in the patient's file (letters from family members for instance) that the patient may not have legal access to. Sometimes doctors may agree to the patient reading the file only in the doctor's presence. Sometimes others may wish access to the file - this permission must be given by the owner of the file (doctor or institution).

In Argentina, the Patients' Rights Act states that  clinical files belong to the patient. Only he or his legal representantives (eg: parents in case of a little child) can have access to his/her clinical records, or in case of a justifiable cause (eg: a legal case) where a judge can ask for the clinical records of a patient. In the sense of this law, the medical institutions (or the doctor in case of private practice) are mere custodian/trustees of the clinical records, but they don't own them. There's a duty to provide a copy of the clinical records whenever the patient ask for it, in a 48 hours deadline. Sometimes therapeutic privilege can ground a refusal of the doctors to give the clinical records to the patient  or part of it (eg: at my hospital, if we have a case of child abuse, neglect or maltreatment, where one of the parents or both seem to be the perpetrator, we can deny him/her access to the clinical records of the child; or for example a letter that one of the parents hand to doctor speaking bad things about the other during a divorce case).

Cheers. Susie.

Dear Marry and Susie, thanks for your interesting input.

IMHO, it is ethical that doctors can keep the information in certain and rather few cases which are enforced by law. However, putting doctors in a superior position which allows them to legally decide which patient information can be handed to the patient, without needing the patient's consent and permission (like in Canada and my country) seems quite unethical.

I wonder which other countries are like Canada?

In UK, patients have the right to see information about them. Doctors / other clinicians of course could withhold some information (e.g.: third party information - information about other people mentioned in the file). In practice our clinicians are encouraged to be open and honest.

In Portugal. The patient is the owner of the information as well. However, due to concerns about the patient, the information is not always given directly to him or her. For example, the patient can have all the information of his or her own clinical file, but mediated through another health professional of his or her choosing. This last professional acts as a patient representative. This insures that the patient has the right to know everything, but everything is explained properly and with sensitivity.

Ethically, patient's information is owned by the patient himself or herself. He/she provides the information to a doctor or clinician in confidence but still owns it. That's why it becomes a breach of confidentiality when a doctor/clinician discloses such information to third parties without the patient's informed consent. Of course there are some legal provisions that allow disclosure of such information to third parties without the patient's consent, for example, when dealing with infectious diseases and protecting the public from such infections. This also applies to samples that are collected from patients - the patients are the primary owners of the samples. However,  it is a common unethical practice among doctors/clinicians to think they own patient's information and do whatever they want with the information without obtaining consent from their patients. I think we need the "Freedom of Information Act" in our countries.

@Vahid et al., in my country (Malaysia), the health information can be obtained freely from a private hospital, but such hospitals are costly.  Fro a govt hospital, I could get info on my aunt's health, but I had to pay for it.  Still it was available upon request and payment. Thanks.

Francis: "However, it is a common unethical practice among doctors/clinicians to think they own patient's information and do whatever they want with the information without obtaining consent from their patients."

Once I told a colleague do not share your patients' identifiable photos in social media without their consent. He jokingly accused me of having OCD!

Hello Vahid Rakhshan 

Please visit the link given below, u many get a bit more information i suppose.

http://www.wma.net/en/30publications/30ethicsmanual/pdf/chap_2_en.pdf

In terms of access to it the patients do.  In the UK the Data Protection Act 1984 and the Access to Medical Records Act 1990 create rights of access the patient reports whether stored on computers or manually recorded.  Medical confidentiality also determines a degree of patient ownership on records since they may not be disclosed without patient consent. 

It is the same in Germany, but those psychiatric patients are excluded, who will get harmed by the knowledge of details of their disease. 

Dear Gerhard, you mean specific types of psychiatric patients or all psychiatric patients in general? How is it determined that a specific patient's exposure to their information can or cannot harm them?

The withholding of patient information on the grounds of protecting them from distress is very often abused.  It is somewhat ironic that a person can be deprived of liberty, subjected to physical restraint, given drugs against their will and yet at the same time needs to be 'protected' from information that might cause them distress.  

The main reason that this patient data is withheld is that it could form the basis of a law suit or disciplinary action against medical staff.   

Thanks for this excellent comment dear Barry.

Fear of liability is, at least in my country, generally the main reason why health team doesn't want to hand over medical reports to the patient, especially knowing that the ones who write on the chart are residents, young doctors, that just "interpret" what the older ones discussed and decided. Seldom there's supervision of the most experienced  doctors on what is written, and you just find this out when legal case begins at court. 

Thanks dear Susie. There are many incorrect diagnoses and treatments that should be buried.

I would much appreciate any info about other countries.

In the US, health records can be accessed by patients and they must be given copies of them if requested through a formal application. The original records, however, belong to the physician or treatment facility. Aside from assuring that records are available to other health care providers, this protects doctors and facilities from liability in case of a lawsuit. That is,  providers keep the records to show what was actually said or done if there is a claim of negligence.

In Australia, patients are entitled to the information in their health record. That information may be the raw record or an extraction of it. They are not entitled to take the physical record. The original physical record may be appropriated by subpoena.

HIPAA in the U.S. is the most relevant law for this question. Patients own their health record. There are circumstances in which, if it is in the best interest of the patient, the clinician (this is normally in mental health) can summarize the record and provide that, but the patient can appeal.

Thanks a lot dear Peter Clyne and Robert Yourell.

Any information regarding other countries is much appreciated.

In Slovakia, the access  to the patient's medical record is strictly regulated by law.  Basically, the patient has the right to access his/her medical records any time, to make excerpts or copies from the file.  Only patients  in psychiatric/psychological inpatient and outpatient care could be denied to access to their  medical records, presumed it could have negative influence on the therapy they are undergoing. However, they have right to file a petition to the court to access the medical records.

All the data in medical records shall be kept strictly confidential and are subject to the personal data protection legislation. Laws  could grant the access to the medical records to certain subjects - e.g. social security, health insurance companies for the purpose of their own control activities  

In general, the records (the physical material, such as files, etc) are owned by the one paying for them, i.e. the state where healthcare is state-funded.

The information on the records is intangible, i.e. has no substance, so generally it cannot be owned.

The holder or collector of the information will often have a separate obligation, not one property-related, to the source of the information. For medical records, medics thus generally have an obligation of confidentiality.

This can be overridden by the state, and is being so overridden in the UK with care.data (see Sterckx & Cockbain, Medical Law Review 2013). The recent HSC Act in the UK specifically overrides the medics' obligations under the Data Protection Act. Under care.data, patients' data can be hired out to pharmaceutical companies. It (probably) has to be anonymised, but many studies have shown how easy de-anonymisation of data can be.

I hope anyone looking is terrified by this!

PS. Put very simply, if you want access to your medical information to be controlled by you, you must only use private-practice medics/hospitals and you must obtain a specific agreement from them as to whom they may communicate your information to. Even then, state law may override the agreement, so you must include a penalty clause that is so drastic that the medic will prefer to delete your information rather than disclose it and incur the penalty. I can't think of any medic who would agree to such a penalty clause, so in reality you must use medics outside your country.

Oh, and bye the way, if you are female or not yet legally an adult male in an Islamic state, your closest senior male relative can probably authorise disclosure of your medical information in such a state without your consent.

In Spain, the patient owns its health information, and health health data are protected by the Spanish law with severe punishment for people accessing health information without consent. Although each patient is the owner of its health information, the medical institutions are the keepers of that information.

In Brazil there is a law is the patient`s medical record.

In the Netherlands the patient owns his personal medical record, protected by law.

I recently completed training on medical ethics for MMeds residents . The group was divided some strongly belief that  patients records belong to them and can look at them at any time  even if  they may not fully undestand what is written about them, Others feel patients records especially if a patient is admitted belongs to the hospital and patients should not even be allowed to read their charts. The practice in most health facilities in my country is more on the latter. I personally belief  patients records belong to them and should access them and read them any time they wish to 

Thanks a lot dear Peter Kovac, Julian Cockbain, Luis Jiménez-Trevino, Vera Barretto Aguiar, Thomas Ehling, Poloko Kebaabetswe.

Dear Poloko, you mean both practices are exercised in your country and hospitals/doctors are free to choose? Or are the hospitals/doctors under some law enforcement and 'must' do one of the two?

Dear Vera, could you please elaborate on your comment?

I'd just like to clarify. There IS a difference between the physical records (including their electronic formats) and the information on them. Please bear this in mind. There is also a difference between owning the physical record, and having the right to share the information in those records (other than with the patient) or to use that information for purposes that the patient hasn't explicitly agreed to. Owning information,i.e. treating information as property that can be owned, is (to put it mildly) not easy. Having the right to control the use or dissemination of information, or having a legal obligation not to use or disseminate that information is much more simple. Simply put, property rights (i.e. ownership) do not generally exist in information.

I'll try and give an example:

I can write a paper stating that the sun is 6-8 light seconds away from the earth. I will own the physical paper I wrote it on, I will have copyright in the selection of words that I used, but I don't own the information (the fact) that that is the distance between the sun and the earth.

Thus if a national law says that patients own their records, this means that they have property rights in the physical records, and implicitly that they have the right to constrain use of SOME of the information the records contain, but not all. Say, for example, that the record shows the patient's address to be 100 Oxford Street, this conveys the information that Oxford Street exists. The patient does not own THAT information and has no control rights over it.

You may counter-argue that such laws only apply to information about the patient herself. This still doesn't work. Let us say that she is Jane Jones, born 1.1.80 in Oxford. She has no ownership, no property rights in that information - she only has control rights where it is conjoined with other information.

Dear Julian

Thanks for your meticulous comment. By "owning the health information" I was meaning "the right to read, copy, or keep a copy of everything written in the patient's record" as I had stated in the question body. However I clarified this in the question, thanks to you.

Ownership does not need to be interpreted as a form of possession, such as owning real estate.  What 'ownership' means in relation to medical records is a right to them.  Patients are entitled to autonomy (with certain legislative exceptions) and as such must be given access, even control over their records. No one can be autonomous with information to make choices.  Autonomy is a fundamental principalist medical ethic.  It is likely unethical practice to keep information from patients. 

Code of ethics

Sealed to the doctor

Art. Deny 88, the patient access to their medical record, fails to provide you with a copy upon request, as well as help give you explanations necessary for the understanding, unless occasioning risk to self or to others.

Patients should have access to certain amount of information. For example, what are they being treated for, what illness do they have, what treatment plan is in place and other possible care options. In my country, it is alarming that quite a number of patients don't know their diagnosis or indeed what they are receiving treatment for.

That's a shame Bawo. In my country too, many patients don't know what exactly their condition is.

But do you think "Patients should have access to certain amount of information." or that patient should be given EVERY information, upon their request?

This depends on the Personal Health Information Privacy Acts in the various jurisdictions. In Ontario, the patient "owns" their chart.  Even though the physician/hospital has created the contents, the information is property of the patient.  The hospital/physician keeps a copy, but the patient at any time can ask to see their data.  They can also restrict access to their data.  Although in Ontario, a presumed member of their "circle of care" meaning any healthcare provider involved in the patient's care, can have access to their data with inferred consent.  The patient must "opt" out of this access if they wish to restrict access.  

In Alberta, the hospital and health care system houses the data and patients must be informed that since we have shared data management, their data is viewable by anyone in the system.  I have not encountered a patient yet, although I am only 6 months here, who has refused to have their personal data entered.  The presumed benefits of shared data is that I can view prescriptions, tests and radiology results from anywhere in the province on the patient, reducing duplication and avoiding medication errors.  The patient can not log into the computer system, but they can request to view their data at any time.  Many patients do request their "chart" in paper format after hospitalization.      

Thanks dear Janis for your detailed information. It appears to me that either Mary's comment about Canada was not accurate, or different rules are in place in its different states.

Marry had kindly stated "In Canada, the doctor or the institution in which the doctor works owns the patient file. The patient is allowed access as long as the doctor is of the opinion that nothing in the file will be harmful to the patient's health. The patient can copy the file at his/her own expense. Sometimes there are items in the patient's file (letters from family members for instance) that the patient may not have legal access to. Sometimes doctors may agree to the patient reading the file only in the doctor's presence. Sometimes others may wish access to the file - this permission must be given by the owner of the file (doctor or institution)."

Do you know anything about the above-quoted legislation in Canada?

sorry to be anal. but please get it clear in your mind as to what you mean. do you mean the physical records, i.e. real property that can be owned, or do you mean the information that they contain, which cannot be owned but can be controlled

this is not simple, and a naive 'oh of course it's like this/that' just muddies the waters even further

and by your ps, you muddy things further - you are NOT talking about ownership but about control rights

In response to Julian Cockbain saying "sorry to be anal. but please get it clear in your mind as to what you mean. do you mean the physical records, i.e. real property that can be owned, or do you mean the information that they contain, which cannot be owned but can be controlled

this is not simple, and a naive 'oh of course it's like this/that' just muddies the waters even further

and by your ps, you muddy things further - you are NOT talking about ownership but about control rights"

Dear Julian, you are very welcome to criticize, as it purifies the topic. I think the assumptions you are making are not very correct. Owning is not only referred to physical things. One can own, yes own, a music, a logo, an idea, some information, etc. This is the right to control its distribution or usage. However, it is still called "owning".

Plus, please read the body of my question. I have clearly stated my concern and my meaning of owning: "Do other countries have a similar legislation? In my country, doctors can refuse to show the patients their own information. They believe and say that the doctor and not the patient owns the patient's information. Is it legal? Is it ethical?".

Then after your previous critique, I clarified even more: 'ps. By "owning the health information" I mean "the right to read, copy, or keep a copy of everything written in the patient's record"'

So it is very simple. I mean the right to READ, COPY, or KEEP a copy of EVERYTHING WRITTEN in the patient's record!

READ (verb) = Look at, interpret, and say out loud something that is written or printed

COPY (verb) = Make a replica of sth, Reproduce on paper

KEEP (verb) = Retain possession of

EVERYTHING (Pronoun) = All things; the whole quantity or number

WRITTEN (Adjective) = Systematically collected and written down; Set down in writing in any of various ways

I hope my question is now clarified.

Sorry, you can own real property (a house or a car) and you can own certain non-material property (copyright in a song, a patent for an invention, a registration of a logo (a trademark)), but you don't seem to have understood. You can control information, but you can't own it. The question of what happens to patients' data hangs on this difference between ownership and control.

I see and I admire the level of your accuracy.

Please forget the world "owning" in my question header, and stick with my concern where I said By "owning the health information" I mean "the right to read, copy, or keep a copy of everything written in the patient's record".

Let me reword my question:

My concern is that 1) if the patient is allowed in your country to have full access to his/her health records, at his/her wish. Is he allowed to read the contents of the records?

2) Can a patient in your country have a copy of his/her health information (in order to ask about the written things from another person or another doctor or a lawyer, or simply because he wants to have a copy).

I hope I am now clear.

Ok - we now see eye to eye. The answer would be that it would be thoroughly unethical if it were not yes to both. :)

on a second thought, I think it is possible to "own" a music. This sentence equals to saying "owning the copyright of" a music. For example, I googled and found websites that clearly use the word "owning" as a synonym for "owning the copyright" interchangeably.

http://www.cnet.com/news/who-owns-your-downloaded-music-after-you-die/

http://www.theguardian.com/money/2012/sep/03/do-you-own-your-digital-content

Increasingly, hospitals give patients electronic access to parts of the electronic medical record, i.e. the physician's conclusions at the end of a visit, new test results etc. In addition,  patients  can request access to all the evaluation and treatment information that pertains to them. They are also the ones that can pass this information on to others, something that the physician or the hospital cannot do (with some legally defined exceptions). All this is part of the notion that there is an ethical obligation to empower the patients and to respect their right to control what happens to them . Thus, the ethical issue may be one of patient empowerment rather than "ownership".

@Johan - I fully agree

This is a legal issue, and not an ethical one. Patients have the right to access to their information in the United States; there may be some exceptions at the fringes. On the other hand patients do not have the right to deprive treating doctors of access to the information, except at the fringes-- they have the right to have inaccurate or defamatory information excised from their record. If I wrote in a patient chart after a 10 minute encounter that the patient  seemed to have a borderline personality disorder, the patient probably could go to court and get me to remove that. But if I made the diagnosis of gonorrhea on the basis of cervical antibody test, the patient probably could not have that expunged.  

The respective rihgts of doctors and patients in this area vary according to legal jurisdiction, of course. 

In Luxembourg, like in many other EU countries, access to the patient file / patient medical data is governed by law. The new Luxembourg law on patient rights and obligations gives the patient a right to access and copy all health data. It includes also a right to get, if desired, appropriate counseling to understand the medical information. 

In my views these informational rights are not mainly a question of ownership, but a question of fundamental rights. I would tend to see these rights, in the field of data protection law, as a manifestation of the right to informational self-determination and, in the field of health law, a question of patient empowerment or at least of informed consent.

Exceptionally, a decision may be taken on medical grounds to block immediate access to a patient  to avoid a therapeutic damage(therapeutic exception). This is an exceptional temporary medical decision that needs a positive second opinion.Access may also be subject to the condition that counseling is available to the patient at the time the information is revealed (diagnosis announcement procedure).

In any case, the patient may not deprive the healthcare provider (HCP) from the information and no information may be deleted (but corrected) during the period that data needs to be archived according to law (ten years period). This is obviously for reason of continuity of care, the HCP right to document his activity and for legal reasons (evidence).

Rights and ownership are two different issues. Ownership , at least in common law countries, is a combination of a right to use, a right to exclude others from use, and a right to transfer the first two rights. 

Patients, as Mike points out, don't have the right to exclude doctors from using the information.They also can't sell their won exclusive access-- their right to access this information is, for practical purposes, inalienable. 

So, as Mike says (or almost says) the relevant question is not ownership, but the more open ended question of what rights do patients enjoy with respect to information about themselves that health care organizations and workers possess. 

Thanks for your detailed input Mike and Allan.

Allan, I agree that these two differ. By my question, I meant "ownership". Well I did not say anything about the right to sell the info (as in ownership) but actually on a second thought, I think it is the patient who has the right to sell his information to third parties. For example, a researcher wants a patient's info for his research. He must pay the patient or compensate in a way they both agree on. If the patient hands over his info freely, it is a favor. If some law allows a researcher to use patient information without his consent, that law is unethical in my opinion. The patient is not a lab rodent.

By ownership, I mean ownership. The right to read, copy, reproduce, sell, deny access, publish, destroy it completely, anything else except changing the info or deleting a part of it and keeping the rest.

In that case, I think one would have to say that the patient and the possessor of the medical record each have partial ownership.

The patient does not have the right to destroy the content of the medical record, as (1) the law requires its preservation; and (2) regulatory agencies and other bodies may require its production by the provider. This could happen in the case of a malpractice trial, of an administrative investigation into the organization or its members, or a criminal investigation. For example (to use a hypothetical that is marginal to a patient who is not paying directly), was a certain device that was billed to the patient actually used on the patient.

but the provider is limited by confidentiality. 

I agree, and think we both are talking about different things.

My original questions were (1) what is legal in other countries? (2) If in a country, it is legal for a doctor to deny the patient's access to his own medical record, do you find it ethical?

So the first part of my question was about the status of different countries. The second part (also reflected in my question header) was about the natural or ethical ownership. I think we should distinguish the natural ownership from the legal ownership. For example, my life belongs to me. So I seem to have the right to do whatever I want to, with it (suicide, euthanasia, etc). This is my natural right. However, in some states, it is legalized, and in some states it is forbidden. In this analogy,

My first question asks "whether in your state, euthanasia is legal?"

My second question asks "if no, do you find this law, ethical?"

Yes-- we were talking about different things. I'll give you my answer to your second question-- it may be somewhat controversial.

A patient, ethically, generally should have access to the doctor's observations (including test results), and to his treatments. He does not have a right to the doctor's thought, except as they *directly* relate to management. The patient has a right to see what the doctor's diagnosis is. the patient does not have a right to know that (for example) the doctor is concerned about the patient's compliance, or that the doctor suspects the patient is malingering. But if the doctor notifies a third party he thinks his patent is malingering, the patient has a right to know that. 

Let me explain the sort of thing I don't think the patient has a right to know. From time to time I have the a patient with a bad job and good insurance. The patient complains of prolonged postoperative pain, and wants extensions of her postop disability status. On the one and, I don't want to miss a problem, or to torture a patient with real pain. On the other hand, to give extensions when there is nothing wrong is unethical, and, besides, if the patient decides to sue me prolonged pain that I acknowledge may be an indicator of a bad outcome. I generally tell the patient I don't find anything about her postoperative condition that will account for the pain, and I send the patient to a neurologist or physiatrist for a consult. If the consultant agrees, the patient goes back to work. But I don't tell the patient I am convinced she is malingering. On the other hand, I don't write it in the chart, either. There is a lot of psychosocial stuff that shouldn't be shared with patient, but that may need to be communicated with other staff.  

Thanks for your excellent input Allan.

I'm appreciative that it was helpful to you!

What about other countries?

It is interesting question, tx advance for asking this fine topic.

In Slovenia the patient owns his personal medical record, protected by law. Patient can enter to his/her information any time after discharge, especially acute psychiatric patients. However I think that forbidden medical information is scarce in some countries. Because patients have their right to access to this information, because after they can make a complaint or ask for second opinion. I think this way is ideal to avoid some medical errors, which are more often occur when there are not clinical pharmacist or pharmacologist included in this process. We should minimize medical errors and this is important topic for patients' safety and therefore avoid this process is scarce.

Lack of precision can be a pain. Nobody can 'own' information. They can 'own' the physical record, the papers, etc, but not the information contained in the record. They can also dictate who, and under what conditions, has access to the data, but that is not ownership.

Hi Julian

We have been through this before, and you can see that there is a line in the question body, reading 'By "owning the health information" I mean "the right to read, copy, or keep a copy of everything written in the patient's record"'.

So, I think your concern was already addressed.

Plus, the term "own" has a sarcasm side to it, as many doctors (at least in my country) think they own the patient and his/her information.

Sorry

I made my thesis about this topic (from ethical perspective) and i see that patient should "own" the information based on works of Kant, Locke, Heidegger and Rawls. 

However, this is not situation in many member states of EU because wrong implementation of Database directive (allthought this is not tested in courts). Without clear legislation, the outcome can be unexpected like it seems to be in Finland, Sweden and United Kingdom: the lack of clear regulation has come up with unwanted consequences because of problematic European Union database directive implementation in those countries. The legal ownership is actually granted to the creators of databases which contains the patient information, and this is not a desirable situation — especially with the fact that all Swedish and Finnish people have the right to access the information by the Patient Data.

However, it was surprise how this issue is bypassed in literature. There founds only few articles  and mainly authors of those are from US and from the field of jurisprudence. Maybe one reason for this is the transdisciplinary nature of issue. 

Dear Jani

That was awesome input. Maybe I too should conduct a research about this. I hope you publish your thesis soon so that I and others can use its valuable information. If it was possible, I would be so grateful if you could lend me a PDF copy of your thesis.

You can find it from my RG page. There is link to it:)

Thanks a bunch dear Jani :) Also congrats on your thesis that I see has been also published as an article.