The Auditor General and the Office of the Information and Privacy Commissioner of BC (OIPC) conducted independent audits of one database (called PARIS) of Vancouver Coastal Health Authority (VCH). I commend them, particularly the Auditor General, for finally exposing the truth (or at least a good part of it) — that our privacy within the health care system is virtually non-existent. I highly recommend that you read/skim the reports. Even if you don’t understand it all, it will give you an idea of how badly our privacy and rights have been violated.http://www.oipc.bc.ca/orders/investigation_reports/InvestigationReportF10-02.pdf
http://www.bcauditor.com/pubs/2010/report7/paris-system-community-care-services-access-and-security
I will reiterate some of the findings from the audits, with a few comments of my own. Please note that PARIS is just one of eight core databases operated by VCH. Patients are referred to as clients.
Privacy Commissioner’s Audit:
– “One of the ethical obligations of every health professional is to protect the confidentiality of patient information. The assurance of privacy is essential for patients to be willing to engage in the frank communication with their health care providers that providers rely on to deliver quality care. Patients assume that their personal health information is kept confidential because it is such a well understood hallmark of the provider/patient relationship.” (pg. 5)
The protection of privacy is a fundamental value in modern democracies and is enshrined in ss. 7 and 8 of the Canadian Charter of Rights and Freedoms.2 – (pg. 5)
– “The following types of information are collected into PARIS: Names of clients, contact information of clients, personal health numbers of clients, allergies of clients, employment, funding or eligibility of funding, education, languages, case notes relating to treatment of clients, names of family members or friends of clients (known as “associated persons” in PARIS), contact information of associated persons, whether the associated person is receiving health care from VCH, financial information and social insurance numbers of clients.” (pg. 13)
– Information was illegally shared with other organizations. When the PCO pointed this out, the government just passed legislative amendments making it legal for VCH to share some of the information. (pg. 16) (pg. 27)
– The information provided to clients (pg. 16) by VCH was “incomplete”, in other words VCH wasn’t telling everything about what happened to personal information. You will find this to be a recurring tactic in the health care/government system. It appears that the premise is that the less we know, the less we will question, the more we will trust the system and the more they can hide. And, as you will see, there was/is a lot they didn’t/don’t want us to know.
And, not surprisingly, I didn’t find any reference to the audits on the VCH website.
– “VCH does not have a secondary use policy in place to ensure the conditions for the use of personal information for research are met.” (pg. 34) In other words, when giving research organizations personal information, VCH did not ensure that “high standards for privacy and security” were met. The Auditor General found that they was no follow-up to ensure that the information was used and disposed of appropriately.
– I found this information particularly interesting. “An important privacy principle is that individuals should have control over their own personal information to the maximum extent possible. One mechanism that provides an individual with the ability to control their personal information in an electronic system is a “masking” feature. This allows an individual to restrict access to personal information that is collected by the public body. In order for this option to be meaningful, the public body must inform individuals that the option is available; there should not be any barriers for the individual to exercise it; and the individual must be advised of the implications and have access to clinical advice. The ability of a client to mask their personal information is particularly important when its collection is mandatory.” “In PARIS, there is an Enhanced Information Security Client (“EIS”) flag feature in the system that enhances the ability of clients to control their own personal information in PARIS. “ (pg. 35) However, the only people who could utilize the EIS were “staff or family member of a staff person, notable person, and clients who can demonstrate the the PARIS security model does not provide sufficient security.” It’s been my experience, through Providence Health Care, that VCH keeps its security arrangements, or lack thereof, secret, so how would anyone know if their information was secure, much less prove it. In essence, staff members and “notables” had rights, the rest of us didn’t.
– I had a doctor ask me why I was concerned about my privacy, after all I wasn’t important. I tried to explain that I thought I was a damn important person, just as important as anyone else. This was interpreted by the doctor as meaning that I thought I would be important in the future. The concept that I am important now, just as I am, with the same rights as anyone else, was beyond this doctor’s comprehension. This attitude seems to be pervasive in the medical system, and I suspect, all government.
– “Because of the large number, and serious nature, of the deficiencies in security, we have chosen not to elaborate on them in this report.” (pg. 37) The Auditor General’s report exposes these deficiencies (see below).
– “Archiving records is an effective means to minimize inappropriate access.” “We found that there was no archiving of records in PARIS.” (pg. 42)
– “In our view, the information that is provided to clients about their right to make access requests is inadequate in that it does not inform them about the process for making access requests, the possible scope of the request (e.g. audit logs), timelines, fees and where the request must be made. Improvements are needed to better inform clients about their access rights under FIPPA. With respect to an electronic health record system, clients should have access to the audit logs for their health record so that they are able to monitor disclosure of their own personal information.” (pg. 43)
– “there is so much access to client records that it is impossible to analyze the [audit] reports.” (pg. 51) Except, of course, for those privileged few using EIS.
– “It must be noted that many of the problems were not caused by PARIS, but instead were the result of human decisions in respect of how personal health information would be collected into, made available by and disclosed through the system, which is a human issue.” (pg. 53)
– “We found that VCH is routinely, and without legislative authority, disclosing identifiable data sets to other public and not-for-profit entities…” (pg. 54
– For employee’s, “privacy training and education at VCH is inadequate.” (pg. 52) Actually, it appears to be almost non-existent.
Auditor General’s Report:
– “ Maintaining the confidentiality and integrity of individuals’ health care records is profoundly important. Failure by health care organizations to properly manage and safeguard this information could have serious consequences, from compromising an individual’s privacy to enabling identity theft or other fraudulent use of personal information to occur.” (pg. 1) ” If adequate controls are not in place, the results could be loss of individual privacy, corruption or manipulation of client information, medical identity theft, or system failure.” (pg. 5) Remember that this system has not been properly managed since its inception in 2001 and this probably applies to all health care information in other systems.
– “I undertook an assessment of a clinical information system used by the Vancouver Coastal Health Authority (VCHA)…In every key area we examined — from the management and assignment of user access to security controls within the health authority’s computing environment — we found serious weaknesses.” (pg. 1) (bolding is mine)
– “Because PARIS users are not granted access on a “need-to-know” basis, sensitive and confidential health care records were accessible to thousands of users who have neither the need nor the right to see the information. Security controls throughout the network and over the database were so inadequate that there was a high risk of external and internal attackers being able to access or extract information, without VCHA even being aware of it. Fundamental controls to prevent or detect unauthorized access to the system were lacking, and monitoring to determine what data exchanges occurred was also insufficient.” (pg. 1)
– “In several areas, the governance and direction that staff needed to build a secure environment were not in place. Staff were not provided guidance on security controls to mitigate risks. The organization did not have an IT security policy and basic security practices (such as building layers of defense within the system) were inadequate.” (pg. 1)
– “Due to the seriousness of the deficiencies, I delayed the publication of this audit report to allow sufficient time for VCHA to address the security vulnerabilities we identified, thereby ensuring that this report would not further expose the system to potential compromise. I have been satisfied with the responsiveness and significant effort that VCHA has put into addressing the most significant problems, in a relatively short time. Over the next months, my staff will continue monitoring the actions of the VCHA in addressing the remaining audit findings. Based on the conclusions of this audit and other work performed by my staff, some of the fundamental security weaknesses identified in this information system may be present to some degree in other government systems. The findings and recommendations reported here should therefore be of use to other organizations in the health industry, as well as in other sectors. Adequate security controls should be built into any system, and it is equally important to undertake regular reviews of critical systems to ensure that they remain sufficiently secure.” (pg. 2)
– “We have not published all the details of the findings and recommendations from the detailed management report, to avoid introducing additional security risks. We consolidated the most significant recommendations from the detailed management report into 10 key recommendations.” (pg. 6)
Recommendations (Please go the Auditor General’s Report for the complete version):
“Access is beyond “need-to-know” – Access granted to PARIS client records is excessive, with users in many cases having full, unmonitored access to all client records. ( pg. 6)
System Security is Inadequate – Controls to detect and prevent external or internal attacks are not adequate. (pg. 7)
Security Policies are Lacking – The lack of a comprehensive security policy for PARIS has contributed to the absence of other fundamental security controls in the system and of the processes affecting the network, database, operating system and application security. The overall organizational security culture has not set the right tone for a secure environment. (pg. 7)
The database is not secure – Lack of proper database security controls means that errant data could be input, data could be corrupted, unauthorized viewing or data extraction could occur. There have been several irregularities, including connections made to the production database by non‑production servers; vendors having continuous database access; users gaining access to the database directly through unprotected roles; and support staff having access to powerful database privileges that should be restricted to database administrators. – (pg. 8)
Risk of data leakage – There are insufficient controls to ensure that client information stored on PARIS has been safeguarded from inappropriate disclosure for the personal or financial gain of insiders or external intruders. Logs are not monitored; traffic to the database is not restricted; information extracted from the database is not tracked; default passwords have not been changed; and the database management privileges are not properly restricted. – (pg. 8)
Monitoring is not Adequate – Inadequate visibility, logging, monitoring, analysis and management of audit trails could result in external or internal attacks going undetected. Most logs are not monitored, limited information is collected, and log management capabilities are insufficient for consolidating and analyzing the logs. (pg. 9)
Access Is Not Properly Maintained – Inadequate user ID and password management practices could put the system at risk of unauthorized and undetected access. (pg. 9)
Unsecure network access – Current system settings and practices do not restrict unsecure connections to be made into sensitive systems. Physical connections in meeting rooms allow non-VCHA computers to connect to the internal network and the Internet. Unaccounted-for laptops are able to connect to the internal network, remote access servers are allowing connections to bypass perimeter defences, and Virtual Private Network (VPN) users are granted too much access within the internal network. – (pg. 9)
Inadequate Traffic Control on the internal Network – Within the internal network, there are no access control mechanisms to restrict traffic to critical servers or to reduce the spread of viruses or malicious code throughout the network. (pg. 10)
Record management practices are lacking – No classification system or retention policies are in place to effectively guide or manage the removal or archiving of client records that are no longer relevant. These records therefore remain accessible and viewable in the system indefinitely.” – (pg. 10)
Additionally, on page 20 the report states: “We found that a comprehensive security policy for PARIS does not exist. Only a few security policies are in place, and some of those have only recently been established. In all of the IT areas we assessed, we found little guidance provided to IT support staff to tell them what security controls should be implemented.”
On page 22 the report states “Both IT and application support staff have full, unmonitored access to all information”, and “Open vendor accounts exist, allowing health care data to be copied even outside the VCH at any time.”
On page 24 the report states “We found that some users with former employment or contractual relationships with the Vancouver Coastal Health Authority are still able to access the PARIS network and its resources.
„. Processes are not always followed to remove or change a user’s access when his or her employment or contractual status changes.
„. We found that hundreds of former users, both employees and contractors, still have access to resources through active application accounts, network accounts and Virtual Private Network accounts.
„. Passwords for powerful, privileged IT support accounts have, in some cases, not been changed even though users who know the passwords have left the employment of the health authority.”
After reading this – major deficiencies in every area, 127 recommendations by the Auditor General, you really need to read VCH’s response on pg. 11. I think this is symptomatic of the system – the creation of an illusion. Some quotes from Dr. David Ostrow, President and Chief Executive Officer:
“We also know that safeguarding that information is crucial — not just to comply with legislation, but to build confidence and trust in those we serve.
VCH believes that PARIS has served our community patients and clients well without any demonstrated risk to safety.
As you are aware, VCH has always placed a strong emphasis on the protection and confidentiality of patient/client information.
VCH acknowledges it cannot become complacent in the areas of security, confidentiality and protection of privacy.”
I really think this guy wants an award. There is no apology, no recognition of the damage done. Quite the opposite, he just wants to blow it off, an “oh well, no harm done” and “aren’t we wonderful” attitude, as if his words still had value. Major deficiencies in every area, virtually open access to all our information but he says that “VCH has always placed a strong emphasis on the protection and confidentiality of patient/client information” A complete disconnect between words and actions, to put it politely. Really, how disgusting, how reprehensible.
As one woman, who came up to speak to me at St. Paul’s, pointed out, that even if the security was made perfect today (won’t happen) all our information up to today is “out there”. We don’t know who has it, how it’s being used, or when it will be used against us. Actually, some people I have spoken to have already run into problems.
Dr. Ostrow’s kind of statements I think of as propaganda/brainwashing. If you say something often enough, no matter how far it is from the truth, people will start to believe it. It is the difference between words and actions. It is a recurring tactic in the government system.
The medical/government system has lost and does not deserve our trust. In my opinion, they have lied, manipulated and conned about the status of our personal/medical information. In fact, it appears that our personal/medical information has never been protected, at least since they started using computers, and probably before then.
When I filed my complaint with the OIPC 6 years ago, I was told that the hospitals had never taken steps to determine if they were in compliance with the Privacy Act. So, to the best of my knowledge, this is the first audit that has been done since the Privacy Act came into effect in 1993. So, it took them 15 years to do one audit.
To add insult to injury, I still have people, who say they work at St. Paul’s, tell me that the system is good. One person said that at meetings they are told to “ssh”, they aren’t suppose to say certain things that are private. Presumably I am suppose to believe that our information is safe because they have a “ssh” policy (at least at meetings). This is someone who works in the system and who, therefore, must have a good idea of the lack of privacy.
As pointed out by the Auditor General, the systems will evolve to meet changing needs, and “Any computing environment has risks that must be constantly addressed and managed.” If the medical system has such a complete lack of concern on security issues now, how can we trust that, even if forced to meet minimum standards today, they will do what is required to meet future minimum security standards.. And again I reiterate, only one core database in one health authority as been audited.
“They [VCH] have told us that the most significant deficiencies identified have been fixed.” (pg. 6 – Auditor General) First of all we cannot trust the VCH to tell the truth. Have they fixed the major deficiencies? We don’t really know because it has not been checked by an independent source and VCH has repeatedly lied to us about the security of the system.
The OIPC and Auditor General offers “recommendations”. They will monitor VCH over the next year to see if VCH implements the “recommendations”. Again, I assume they will rely on VCH’s “word”. Will we be told if VCH doesn’t implement some of the recommendations? Quite honestly I doubt it.
The rest of the medical system is presumed to be as bad or worse. Who is going to ensure that they are “fixed”.
While I commend the Auditor General on the audit, I want to point out that I take exception to a statement by the Auditor General that “security is not the main focus of the health care system”, implying that it is understandable that they made these horrendous errors. People walking or driving don’t have the traffic laws as their main focus, but will be fined and even jailed if they break the laws. Most people’s main focus is earning an income, not paying taxes. Yet, they will be fined and even jailed if they break the tax laws. VCH will not be fined (of course they would pay with our money anyways), no one lost their job, was disciplined or was charged. These people who have been violating our rights for years will not be punished in any way. That’s how much our rights matter.
When there is no trust, it leads one to wonder if some of the information collected illegally was done so because people, who had illegal access to our information, wanted it that way. Are tests, not necessary to the patient’s health care, being done for other purposes? Etcetera.
Also, has anyone heard from the doctors or nurses, etc. or their associations or unions? Have you heard of any of these standing up and saying this is wrong and needs to be fixed? I haven’t, with the exception of a report, from the doctor’s association, outlining their concern regarding the central health database, and I don’t believe it addressed the essentially non-existent security in the medical system. I have had some doctors, etc. come to me and tell me that I’m wrong, that our information is safe. But I have also had doctors, etc. tell me, quietly, that I was right. One doctor told me that the loss of information from the hospitals wasn’t a leak but a flood. So true. But the reality is that one person, such as myself, shouldn’t have to spend 5 years, and counting, standing in the streets, bringing this to people’s attention, taking all the abuse, when so many people knew the truth.
Suggestions:
Please note that I hope these suggestions are just the start of an open discussion by the people of this province on how best to make the medical system, and the protection of our information, more transparent and accountable to us (ie. all the people).
1. We need to have the medical system continually monitored
2. We need someone who is independent of the government to continually monitor the health system. PCO calls itself independent but when the privacy commissioner is appointed by the politicians and your career advancement is dependent on the politicians, you are not independent. In addition, PCO has to stick to looking at what is legal, what is allowed under legislation. We need someone who can look past that, to what should be made legal, or what legal rights should be revoked, and what other methods/systems could be used to accomplish the same purpose (ex. sharing information) that would not impact our privacy.
3. I am concerned with the frequent reference in the OIPC report that if the hospitals want to share information, just have yourself designated as a health information bank under the E-Health Act, which legally allows sharing. I think this needs to be reviewed.
4. Possibly this person(s), group(s) could be elected. I would suggest we have more than one person/group reviewing different hospitals or they could alternate health authorities so a person (group) does not become embedded. Their findings could be put on a website and/or their could hold public forums to hear people’s concerns and experiences.
And for those of you who would like to accuse me of doing what I do for reasons other than “protecting my rights”, I would not be the slighest bit interested in auditing the hospitals. And my word has value.
5. We should know about any person/group who is looking into privacy issues in the health care sector, who they are, who pays them, and the scope of their mandate. They should not be allowed to hide in the shadows.
6. Information should be shown on a website and/or other means, accessible by the public, sufficient to allow the public to know who has access to their information and under what circumstances. For example, The OIPC has recommended a role-based access control system. “role-based access control (is) capable of mapping each user to one or more roles, and each role to one or more system functions.” (pg. 20). This mapping could be provided to the public.
7. The public should be told, via a website and/or other means, what information is being provided to what research organization for what research. If everything is above board, then there is no need for all the secrecy. The general topic of the research would probably be sufficient.
8. As recommended by the OIPC, people should be informed what to do to mask their personal information.
9. As recommended by the OIPC clients should receive a copy of audit logs automatically.”(pg. 42). Plus, there shouldn’t be roadblocks to a patient accessing their medical information. One of the most frequent complaints I hear, when I am outside St. Paul’s, is how difficult it is to get access to their own information. Interesting isn’t it, when everyone else has access. I also think of this as a tactic to make it appear that the front door is locked tight so people wouldn’t notice that the back door is wide open.
10. One central committee should prepare the forms for the health authorities. This would help to ensure that all forms ask legal questions, are easy to update and audit, and would save taxpayers a lot of money by reducing redundancy.
11. Efforts should be made to determine who has illegally collected our information, and have it deleted, after informing the “client”. A law should be passed which states that anyone having and using patient information, unless directly related to patient care, will be severely punished. But I don’t know what you do about the information that has gone out of Canada.
The medical system has lost all right to be trusted. I now operate on the basis that if they can’t prove, it isn’t true.
And, in the medical system, the only safe information is that which isn’t given or is false.