Fall 2009 Privacy Rights in the Digital Age Download PDF edition Read more Transitions Subscribe See our ad rates Support Transition Acknowledgements

In This Edition FEATURES Editorial by Micheal Vonn E-Health 1: Questions & Answers: An Interview with Glyn Townson Edition Glossary It's the Law ICM 1: What is Integrated Case Management? An Interview with Tim Beachy The Good, The Bad and The Unknown Protecting our clients by Jane Dyson ICM 2: Special Concerns for Community Organizations by Darrell Evans and Vincent Gogolek E-Health 2: The law, risks and safeguards by Sara A. Levine To Learn More Using Online Charting What Can You Do?

OTHER Disability Rights Training by Sam Bradd Shelley Hourston Receives Award BCCPD Faces: Karen Martin BCCPD Calls for Cell Phone Driving Ban The Importance of Play by Nancy Chamberlayne Community News SPECIAL Living with HIV/AIDS? We need you! Help Transition Go Green >>Edition Scorecard   Thanks to Sam Bradd for his theme illustrations

A special thank you to The Law Foundation of BC for their generous support of this edition.

Editorial

by Micheal Vonn

Our personal information has never been so popular. Everyone wants it! The government wants it. Google wants it. Microsoft wants it.

Those clamouring for our information promise that they will keep it very, very secure and will protect our privacy like gangbusters. Are we likely to see those promises fulfilled? Don't hold your breath. Unless blue is a good colour on you.

In this edition of Transition, we look at who wants your personal information and why. We also look at the electronic systems being put in place right now in BC to gather your information and why this is something you need to know.

First, the government has plans for your health information. The public has been kept in the dark for years as the provincial government has been working to create a massive, centralized data distribution system to make our personal health information accessible first province-wide and, ultimately, nation-wide. Health care workers, some government workers and many researchers will be authorized to tap in to this giant vat of citizens' health data through thousands of access points.

The system is called "e-Health" and, although it's costing us billions of dollars, we are told that ultimately it will save money. It's supposed to make health care better and more efficient. The bad news is there's almost no evidence that e-Health saves money or improves health.

The worse news is there's a lot of evidence that e-Health systems are given to massive cost overruns, cannot provide reasonable security and threaten patient privacy in ways that were impossible in the stodgy, old paper-based system. Millions of records have been lost or compromised. The "data hemorrhaging" is relentless. Just last May in Alberta, 11,582 electronic patient files were captured by a computer virus and are now in the hands of nobody-knows-who.

Second, you need to know that e-Health is just one part of a much broader government information-sharing project. While the government assures us that information in the e-Health system will only be used for health care purposes, they are in fact building the architecture to share our health information with other ministries.

Government's bigger data integration project is called the Information Access Layer and includes Integrated Case Management. The general idea is to give government an astronomical amount of information on citizens, including information from community organizations that receive government funding, which the government says will be used to provide "better service." Those in the disability community should be very skeptical of these claims, remembering that historically government data-matching has been used to disqualify people from needed benefits, not enhance services.

Government is saying we are "behind" in building our e-Health system and urging us to speed ahead. But, in other jurisdictions that are "ahead" of us, like the U.K., e-Health is such a catastrophe that opposition politicians are calling for the whole system to be scrapped.

This is sounding grim, I know. Especially considering that we naturally want appropriate information to get to our service providers. There are some important advantages to electronic systems. The question is how we gain the benefits without sacrificing our privacy and personal security.

The United Kingdom has spent more than £13 billion centralizing patient records in government databases. It has been an acknowledged fiasco. In a 2008 British Medical Association poll, 9 out of 10 doctors said they don't trust the government with patient data security. David Chan, MD, from a letter to the editor, Vancouver Sun, June 15/09.

Educating ourselves is the obvious place to start. The complete absence of public awareness on e-Health has driven a small, informal coalition of privacy-concerned organizations to try to fill the informational void. Learn more at BC's Big Opt Out at www.bcoptout.ca. There is lots of information and some tools to help protect your medical privacy, including a step-by-step guide on how you can "opt out" if you so choose, an FAQ on e-Health and sample letters to health professionals and your MLA.

Read this Transition and share it. Then, if you are concerned about the privacy of your information, speak up! Tell your elected officials. Tell your health care providers. Ask tough questions and demand real answers.

Our goal in this Transition is to inform the disability community, our not-for-profit community partners and the public about these changes underway in BC. They affect the collection, access, sharing and linking of personal information. We look at the implications of these changes for our privacy rights, and review BC's laws on privacy and personal information.

Many privacy advocates think the huge central database systems being built by the government are the wrong model for privacy protection and security. And putting our personal information into the hands of private technology corporations, with their dubious privacy track-record, is not the only alternative. There are viable options for genuinely client-controlled records.

If that's what we want, we need to say so: loudly, insistently and right now. Before it's too late.

Micheal Vonn is Policy Director of the BC Civil Liberties Association

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	Our thanks to the City of Vancouver for their financial support with the rent for our office space and with our Membership and Outreach Coordination.

E-Health 1

An Interview with Glyn Townson

 

What would you like our readers to know about e-Health?

Major changes to how our personal healthcare information is handled, stored and used are underway. The average citizen has no idea these changes are taking place and what the potential problems might be.

The law governing e-Health, Bill 24, was passed last year allowing the provincial government to create the systems it needs to collect the information it wants. The Act empowers the government to create something called Health Information Banks (HIBs) through which it will be able to share information with other health information banks--for example, prescription drugs, diagnostic images, blood and, ultimately, your personal Electronic Health Record in your doctor's office.

The idea is to have all of your personal health information available from the various systems in one place. Sounds good, sounds like something we should have been doing all along. There are some obvious advantages to electronic records. But the government isn't sharing with the public how they are going to do it. The proposed system would provide vast amounts of information in new ways and to people who have not had this access before.

Why should people with disabilities be concerned?

Of all groups of individuals, people living with disabilities have added barriers to access the services that can make huge differences in their daily lives and quality of life. Access to treatment procedures, income support, secure housing, good quality nutrition and proper community supports are all necessary for full participation in our communities.

E-Health is only one piece of the provincial government's overall plan. The larger picture involves electronic systems that track your personal information between government ministries. This is something that should concern all of us and, perhaps especially, people with disabilities.

 

Your health data (prescriptions, blood tests, etc.) will link to the Health Information Access layer which will be accessible by health professionals, governments and other unidentified parties.

Are these systems used in other parts of the world?

There have been thousands of privacy breaches in the United Kingdom where these kinds of systems have been in use for some time. In the US, there have been thousands of breaches of private information. Closer to home, in Alberta in early July 2009, it was reported that due to a computer "virus," thousands of people's private medical information was uploaded--a better word would be "leaked" or "stolen"--to websites from the government's computer system.

Can you give a "worst case scenario"?

If there was a privacy breach and your information was accessed by someone who should not have access, you may not be able to buy some kinds of insurance or you may even be denied employment. Individuals that you would prefer not to have personal information about you may have access to it without your knowledge.

The provincial government has not said that e-Health will keep your personal health information private from third parties. In fact, the government has admitted that ultimately e-Health is intended to link to other electronic data sources developed by law enforcement and social service agencies.

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So, why does the government want e-Health?

From the start, the government has told us e-Health is a cure-all: from cutting costs and increasing system efficiencies, to providing better health care.

Do you challenge these claims?

The government's position is that they want to increase patient safety, contain costs and improve the quality of medical care. As advocates, we have no argument with some of the proposed goals. However, the current plans and methods raise a lot of privacy concerns and many of us question whether the current plans can even achieve those goals.

In 2004, the Government of Canada invested $500 million in an independent not-for-profit corporation--Canada Health Infoway--to speed up the development and adoption of modern systems of information technology, such as electronic patient records.

The province of BC has been moving to electronic surveillance of its citizens through services like welfare, income tax returns and banking information. This system will add another dimension that will erode personal privacy rights.

What are the positive outcomes?

More people involved in your health care will have access to your personal information quickly and from many different locations. This does have the potential to improve care.

What safeguards would you like to see put in place?

We need the right to choose whether or not to participate in e-Health. And, if we do wish to participate, then we need to be able to choose which information we're willing to share and which we aren't. Finally, we need a truly massive and impartial information campaign informing citizens about e-Health.

The only tool we have been offered so far by government is the disclosure directive: the ability to mask all of your information in a particular HIB.

Does e-Health jeopardize our rights?

In its current form, e-Health will absolutely increase the risk to your constitutional right to privacy.

Where can I find more information?

A coalition of community groups has put a website together with detailed information at The Big Opt Out: www.bcoptout.ca. The site has information for patients, doctors and others interested in how to protect their private medical health information.

What can I do to speak out on this? Who should I contact?

Inform yourself. Read everything you can about these changes and ask questions. You can let your healthcare providers know that you want to assert your right to privacy and that any information they share about you must be done only with your consent.

Glyn Townson is on the Board of Directors of BC Persons with AIDS Society

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How does e-Health work? When you visit your doctor, he/she will enter the details of your visit into your Electronic Medical Record (EMR). Your EMR touches on pretty much everything about your health, including demographic information, your medical and surgical history, current medications, advance directives, and diagnostic data. After every entry, the information in your EMR is automatically added to your e-Health Electronic Health Record (EHR). Your EHR is part of the e-Health superstructure which is divided into Health Information Banks (HIBs). Each major area of health care operations will have its own HIB, containing every individual's information. Those who are given access to e-Health--people not yet specified by the provincial government--will be able to pull any information they deem necessary from any HIB. Excerpted from BC's Big Opt Out

Edition Glossary

Bill 24

The E-Health (Personal Health Information Access and Protection of Privacy) Act was passed in BC in 2008. It allows the BC government to gather electronic patient records and create large databases called Health Information Banks. Once in the database, the information can be used for many purposes by many people.

Disclosure Directives

Under Bill 24, people can create a disclosure directive that limits access to their personal health information by users of an e-Health database. Making a directive is not an absolute right, however.

e-Health

This is a general term referring to "electronic health" management. Rather than paper-based records, patient information will be entered into computers and electronically available. E-Health can also refer to Bill 24.

Freedom of Information and Protection of Privacy Act (FOIPPA)

BC's FOIPPA governs how public bodies in BC can collect, use or disclose personal information, including personal health information about you.

Health Information Access Layer (HIAL)

This is the new "layer" of electronic access created by Bill 24. It allows government to link Health Information Banks together and to make the resulting combined database accessible to various parties.

Health Information Bank (HIB)

This is a new term created in Bill 24 for a database containing large amounts of information from a single source. For example, HIBs will soon be created from blood tests, Pharmanet records, diagnostic images, and other health services. These banks will then be linked together in the Health Information Access Layer.

Informed consent

A person can be said to have given informed consent when consent is based upon a possession of and clear understanding of the facts, implications and future consequences of an action. Some advocates claim informed consent will be impossible with these new databases.

Integrated Case Management (ICM)

The aim of ICM is to electronically link information on individuals collected by organizations delivering services to the public, including government departments and not-for-profit organizations.

Personal Information Protection Act (PIPA)

BC's PIPA governs how private sector and not-for-profit organizations can collect, use or disclose personal information about you.

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It's the Law

BC has 2 laws that govern freedom of information and protection of privacy. Both of the Acts permit disclosure of your personal information in accordance with a provincial law. By enacting Bill 24, the government has greatly increased its ability to collect your personal health information from a wide range of private, public and not-for-profit bodies.

What is personal information?

Any recorded information that identifies you, such as your name, address, race, religion, sexual orientation, disability, fingerprints, information about your health care, educational, financial, criminal or employment history, and other people's opinions about you and your own opinions.

Act One: FOIPPA

The Freedom of Information and Protection of Privacy Act (FOIPPA) sets out the rules for how public bodies in BC can collect, use or disclose information.

These public bodies include: provincial government ministries, municipalities, regional districts, universities, municipal police forces and hospitals, and professional bodies such as the College of Physicians and Surgeons, and the Law Society of BC.

FOIPPA gives you the right to request access to records held by public bodies, request corrections to your personal information, and to have your personal information held by public bodies kept secure and private.

If you have a concern, you can ask the Office of the Information and Privacy Commissioner (OIPCBC) to review decisions by public bodies about privacy and access to records.

Act Two: PIPA

The Personal Information Protection Act (PIPA) sets out rules for how private sector and not-for-profit organizations can collect, use or disclose personal information about you. These organizations include: businesses and associations, not-for-profits, labour organizations, landlords and doctors in private practice.

PIPA gives you the right to know why an organization collects, uses or discloses your personal information, request access to your information and request corrections, or complain if you have a concern with how your personal information is being used.

PIPA requires organizations to obtain your consent when they collect, use or disclose your personal information, tell you how your information is being used and to whom it has been disclosed, and destroy personal information about you that it no longer needs for the purpose it was collected for or for a related legal reason.

If you are not satisfied with an organization's response to your concerns, you can ask the

Office of the Information and Privacy Commissioner to review the matter.

Contact OIPCBC

info@oipc.bc.ca • http://www.oipcbc.org/

For toll-free access, call Enquiry BC at one of the numbers below and request a transfer to (250) 387-5629.

Enquiry BC

Vancouver: (604) 660-2421

Elsewhere in BC: (800) 663-7867

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What will be your legacy? Be part of ours. We are working toward our legacy, too. It’s a legacy for people with disabilities living in all corners of BC and it includes: dignity and independencei income security full citizenship and participation in the communities where we live improving our communities to make inclusion a reality–through social change, education, transportation, accessible buildings and more

For information on bequests and other forms of giving, please contact Sam Bradd tel 604-875-0188 email sam@bccpd.bc.ca or fax 604-875-9227.

 

ICM 1 • An Interview with Tim Beachy

What is Integrated Case Management (ICM)?

ICM is a system that links and shares personal information about clients amongst selected parties, like government departments, professional institutions and social service organizations. According to the provincial government, this information would be shared for various reasons, such as evaluating and improving services to the public and to individuals.

What does the public need to know?

The major change in this area is the province's policy direction and public investment in new software systems in health care and human services. These systems can collect and contain information on every user of services and make some of that information available to others who have an interest in it.

Many activists and advocates are deeply disturbed by this trend. First, massive database systems can have programming flaws, information errors, leakages, sabotage, etc. Second, masses of accumulated data gives the holders of that data more power and control over the data and, very likely, increased control over those citizens whose information has been accumulated.

Why should people with disabilities be concerned?

Many people with disabilities use medical, health and human services more than other citizens. For those who do use these services, information about them will exist in more places and in more databases. So they're understandably concerned. The laws do allow people to exercise some control over how their information is used, but we think that reasonable controls will be lost as more and bigger systems are put in place.

So, we're concerned about the big picture. But, we're also concerned about the individual picture. For example, say you go to an organization like BCCPD for help applying for the Persons with Disabilities benefit. You have to provide a lot of personal information to them. Then, say that information is taken into the ICM system--which it will be if BCCPD receives government funding. What can people learn about you from your file? What conclusions or judgements might be made about you based on the information? We've all seen cases where similar databases are used and people have suffered because their information leaked out, was incorrect or was used in a prejudicial way against them.

This kind of data about people with disabilities is very complex and "information-rich." To achieve truly responsive systems that also protect personal privacy in this context will require extraordinary investment and sensitivity. 

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Why is the provincial government creating ICM?

Governments tell us these systems will improve service; they'll provide "the right information to the right people at the right time." This, they say, will improve individual decision-making, referrals to other service providers or ministries and, ultimately, create better outcomes for people. Governments also tell us they will save money, and allow resources to be used more efficiently and wisely.

Is there a conflict between government's and citizens' needs?

Government has a high need for efficiency and accountability. Citizens have a need for high quality, timely services and supports. These needs can, at least theoretically, be in balance, but many people believe they've never been balanced appropriately. ICM systems may help achieve more of a balance over the long-term. However, avoiding the high risks to people's privacy must be a priority. Otherwise people won't trust the new systems and that won't work for either the government or citizens.

Do you have other concerns?

The laws around all this are confusing because one provincial law governs public bodies and one governs private bodies. Not-for-profits receiving government funds will be caught somewhere in the middle. For example, if personal information held by a not-for-profit society is swept up into a system operated and controlled by government, how will the society maintain its legal obligations to protect that private information? And there are many other questions.

What are the possible positive outcomes?

Some advocates are in favour of these systems. They believe there are many benefits to be had: like easy and fast transmission of information from one professional or department to another or coordination of services.

If ways can be found to make ICM systems truly responsive to the needs of individuals, such a system may become trusted and used to better support and serve clients.

What are the possible negative outcomes?

There are, no doubt, potential horror stories about individuals and groups that we'll hear about over time. One very negative outcome I can see would be the time wasted in trying to construct massive ICM systems that are not trustworthy or trusted. But, when governments make investments of this size, they tend to become so committed to the investment that other solutions aren't looked at, delaying real solutions for years.

What safeguards would you like to see put in place?

Education is the best safeguard. We all need to understand the implications of these systems. There are personal, group, community and global issues and risks to be discussed and understood. Those promoting the big ICM solutions have been given very large investment budgets. In BC, these systems are quite far along in development, though there has been little engagement with the public, identified special interest groups or the organizations that serve and support many persons with disabilities or other groups. Getting engaged and educated is crucial.

Tim Beachy is the Chief Executive Officer of BC's United Community Services Co-operative in British Columbia.


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The Good, The Bad and The Unknown

Large, centralized databases with all kinds of personal information: what are some of the Good, Bad and Unknown possibilities about e-Health and Integrated Case Management?

Good

• Services you receive from different health providers, organizations and/or government departments may be better coordinated
• Access to information is immediate
• Databases of information can be used for better planning of public services and programs
• Your health information is available to a range of health professionals, no matter where you are, even if you are incapacitated or unconscious
• The province promises these systems will improve "quality, accessibility, productivity and cost savings"

Bad

• There has been little public education about these far-reaching plans
• Breaches are inevitable in any large computerized system
• The costs are huge--taking resources from other greatly needed improvements--and the benefits are unproven
• Though e-Health might reduce certain medical risks, its current structure will risk your constitutional right to privacy
• The BC Government did not support the development of e-Health technology by a Canadian-based company. Instead they chose a subsidiary of a US-based company to develop and service e-Health. Like all US companies, it is subject to US law, including the PATRIOT ACT, which allows the US government to require companies to disclose information in systems they operate or have access to

Unknown

• The province has not specified who will be able to access your health or social services information
• The province has not guaranteed e-Health will keep your personal health information private from third parties
• There has been little evidence provided to date to show how these systems will save money
• It is unclear how not-for-profit organizations, who receive government funding, will balance the commitment to their clients' needs and privacy with the legal requirements to share data

With thanks to www.bcoptout.ca.

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BCCPD UPDATE

Participants in Vancouver training

Disability Rights Training

by Sam Bradd

Norman Boucher said, "I went to the voting place, but I couldn't go in. They offered to carry my wheelchair up the stairs and I said no. I wanted to exercise my right to vote--and the location should have been accessible."

Boucher's story captures one experience of someone with a disability who could not fully exercise his/her human rights. He is one of the co-leaders of the Disability Rights Promotion International Canada (DRPI Canada) project launched this year in partnership with the BCCPD.

DRPI Canada is working to establish a holistic and sustainable system to monitor disability rights in Canada. Local disability organizations are taking the lead in coordinating the monitoring sites and supervising the data collection. At the Vancouver monitoring site, DRPI Canada benefits from the expertise of its local partner, the BCCPD.

To get us started, DRPI Canada held a six-day training session in Vancouver in May 2009 to train a team of people, all of whom have a disability, to be human rights monitors. The training began with an overview of local human rights issues by Frances Kelly from the Community Legal Assistance Society, followed by a workshop on economic, social and cultural rights funded by the Department of Canadian Heritage. Throughout the next days, the monitors learned how to interview their peers about their experiences of human rights violations, to obtain free and informed consent, and, to protect the confidentiality of information collected.

There were many conversations about the differences between advocacy work and human rights monitoring.

As "monitors," the participants said they are prepared to be neutral and bear witness to unfairness, injustice and discrimination in our communities.

As disability "advocates," the monitors said how it is hard to take off the "advocate" hat when an interviewee shares his or her problems. To bridge the gap between these roles, the group decided to promote self-help and leave a list of community resources with interviewees.

Disability Rights Promotion International Canada is a community-university alliance headed by Dr. Marcia Rioux at York University in Toronto. It brings together community members, people with disabilities, researchers, lawyers, media experts, statisticians, policy experts and students to create a holistic, sustainable system to monitor disability rights in Canada. DRPI Canada is funded by the Social Sciences and Humanities Research Council of Canada (SSHRC).

For more information, please visit www.yorku.ca/drpi/Canada.html. You can also see more on BCCPD's website at www.bccpd.bc.ca, under Projects.

Sam Bradd is BCCPD's Administrative Director and Vancouver Site Coordinator, DRPI Canada


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BCCPD UPDATE

Shelley Hourston Receives Award

Shelley receives award from Vancouver Mayor Gregor Robertson

We are delighted to announce that Shelley Hourston, director of our ADAP and WDI Programs, has received an Honourable Mention in Vancouver's Access and Inclusion Awards. These awards "recognize individuals and organizations that demonstrate leadership and commitment to enhancing accessibility, inclusion, universality and the elimination of any barriers that may impede the full participation of persons with any type of disability in community life."

Shelley received this well-deserved recognition for her work when she was presented with a plaque by Mayor Gregor Robertson.

The Mayor, presenting Shelley her award noted that she:

• facilitates access to health and wellness for people with disabilities by raising awareness of the barriers to community participation caused by disabilities, medication, stigma, low self-esteem, social and physical isolation, and lack of education opportunities.
• is a recognized authority in health literacy, access to health information and services for people with disabilities. Shelley was cited in the Federal Disability Report: Advancing the Inclusion of People with Disabilities. Her chapter entitled "Health Literacy and People with Disabilities" was published in the Medical Library Association (US) Guide to Health Literacy at the Library (2008).

Be Prepared for the H1N1 Flu this Fall

Many people with disabilities can be seriously affected by health emergencies such as a pandemic influenza. Here are some simple tips for the coming flu season:

• Get an annual influenza vaccine
• Wash your hands often
• Avoid sharing anything that may carry germs
• Stay home if you are sick

For more detailed information on pandemic influenza preparedness, go to http://www.health.gov.bc.ca/pandemic/tools.html.


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BCCPD UPDATE

Living with HIV/AIDS? We need you!

Join the BC Coalition of People with Disabilities' new health project

After 30 years of advocacy, the BC Coalition of People with Disabilities (BCCPD) knows the power of people with disabilities sharing their experiences and knowledge with others.

The common theme among people living well with disability is their ability to create a personal path to HEAL--health education, advocacy and leadership.*

We are pleased to offer our first HEAL program: creating five HEAL guides for people living with HIV/AIDS.

If you are a person living with HIV/AIDS and have some experience with one or more of the topics below, we want to hear from you. We'll be creating a series of booklets on the HEAL approach to living with HIV/AIDS and:

• Depression
• Bipolar disorder
• Substance misuse/harm reduction
• Stigma
• Episodic disability

Confidentiality is assured and you may participate without having your name published if you wish.

Interested in hearing more? Please contact Shelley at BCCPD:

• Phone 604-875-0188 or toll-free to leave a message at 1-877-232-7400
• TTY 604-875-8835 or fax 604-875-9227
• Email wdi@bccpd.bc.ca

*You can read much more about HEAL in the Summer 2009 issue of Transition.


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BCCPD Faces Karen Martin	Job Board Coordinator and Emergency Preparedness Coordinator Pet used to have two kitties Favourite recent movie Milk Favourite all-time movies Lord of the Rings trilogy Influential book "For Your Own Good" by Alice Miller Favourite Saturday afternoon tap dancing class #1 world issue poverty #1 disability issue lack of understanding by people who don't have disabilities

Protecting our clients

by Jane Dyson

What will Integrated Case Management (ICM) mean for BCCPD's Advocacy Access program?

People with disabilities are all too familiar with providing information about every aspect of their lives: health, medication, family relationships, employment, income, assets--the list is almost endless--in order to apply for services they need. In fact, our community is probably one of the most scrutinized groups of people in Canada.

The staff and volunteers who work in our Advocacy Access program know this first hand, both as people with disabilities themselves and as advocates.

In order to assist people with disabilities to obtain provincial and federal income supports and other benefits, we gather a large amount of personal information. We guarantee our clients confidentiality and we take that promise extremely seriously. All case files are kept securely locked and all database systems are carefully protected. We never share information about a client unless the client has specifically given us permission to do so. When former clients request copies of their files, we require them to sign a release and make sure the signature matches the one on file before we provide them with any records.

We have serious concerns about the new systems that are examined in this Transition--e-Health and Integrated Case Management (ICM). At this point, we cannot say for sure how we will protect our clients' information or the degree to which this will be possible. For example, within the ICM system, our client files could be accessed by government ministries because we receive some government funding. The law governing these changes is complex and organizations such as BC's Freedom of Information and Privacy Association are helping to clarify how the legislation will impact the not-for-profit community.

The BCCPD, and other community organizations, are "safe havens" built upon trust: we are here for people who need help to find their way through complicated government processes, legislation and policies. If our clients' information becomes part of government databases, how can this not affect that trust relationship and our ability to do our job?

We will continue to work with other community groups to advocate for safeguards and clear limitations on governments' access to your information. And, we urge everyone to become informed and stay tuned for updates.

Jane Dyson is BCCPD's Executive Director

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	Visit Clicklaw Clicklaw is a new website, funded by The Law Foundation of BC, aimed at enhancing access to justice in BC. It features legal information and education created by 24 contributor organizations--including BCCPD.

 

ICM 2 • Special Concerns for Community Organizations

by Darrell Evans and Vincent Gogolek

Risks of the digital age

Darrell Evans (top) and Vincent Gogolek of FIPA

We live in a digital age. Much of what was once done by hand, is now being done with electronic devices and records. These electronic marvels can be hugely beneficial in terms of delivering services more effectively and efficiently while reducing costs. But they also bring their own set of risks.

When it comes to the delivery of social services to vulnerable people, the biggest risks of the digital age are:

• the transformation of independent service providers, including not-for-profit organizations, into collectors of personal information for, and agents of, government,
• too much scrutiny by government into the private lives of citizens, and consequently,
• a potential decline of service quality due to the loss of confidentiality and trust agencies need to serve people effectively.

Community study underway

The BC Freedom of Information and Privacy Association (FIPA) is conducting an independent investigation into the new government initiative that is bringing the digital age to the health and social services sectors in BC. Our preliminary findings should be a clear warning to government, the independent social service sector and the general public that all is not well with the BC government's plan for Integrated Case Management (ICM). In the government's words:

"Integrated Case Management" will provide the holistic view of each citizen required to truly integrate delivery of social services - linking case information collected by other organizations delivering services to the public, such as the ministries of Health, Education, and the Attorney General, other provinces, the federal government, and Service Delivery Providers."*

Does that sound a bit like "Big Brother" to you? It certainly did to us when representatives of some concerned service organizations came to FIPA asking that we look into this project.

The United Community Services Co-op had become alarmed at the extraordinary new demands that would be made for access to the personal information of their clients under ICM systems. They were concerned about the ethical, legal and procedural ramifications for their organizations and for their relationship with their clients.

Protecting the privacy of citizens from governments and other powerful entities is one of FIPA's main goals, so we launched a study into the ICM system with the support of the Co-op and the Law Foundation of British Columbia.

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Our study is still in progress, but preliminary findings indicate that, while the ICM system may have some very worthy goals, it is more likely that it will contribute to a Big-Brother "Surveillance Society" than better service to the public.

As it says in the government's own description, the ICM System would provide government officials with unprecedented access to extensive information about BC citizens' daily lives. The information grab will not stop within government: it will extend well beyond to capture the social service agencies contracted by government to provide services to the community.

We're looking at a massive and comprehensive system for sharing the most sensitive and potentially prejudicial personal information of every citizen in the province--because, after all, who doesn't receive government services?

What ICM could mean for service organizations

FIPA's research also indicates that ICM could seriously degrade services to the public by radically changing the culture of the independent social service sector.

These service groups--mostly not-for-profits and charities--if they do their job of service well, will grow and may eventually be recognized by various government and private sector bodies as an effective, efficient and low-cost way of delivering services to a needy part of the community.

ICM has the potential to transform that culture from one where helping people in distress is paramount to one where service organizations become agents of government. Their new function will include funneling their clients' most intimate personal information to the provincial bureaucracy.

Another problem is that the provincial government contracts with independent service providers are not consistent. The contract language can vary considerably on the question of government access to information held by the organization.

For example, if the work an organization does is by way of a contract for or on behalf of the government body, all the information it collects, uses and discloses for the purpose of that contract will be subject to the Freedom of Information and Protection of Privacy Act. However, the Personal Information Protection Act would still apply to the organization itself and it will have legal obligations around security, openness and consent imposed. Those obligations will apply to all the other personal information it collects, uses and discloses which is not covered by a contract with a public body.

This will cause a great deal of confusion for service providers. How will these obligations be balanced? Under this proposed system, can they be balanced at all?

The community's role

An ICM system that has the capability to harvest, store and inter-relate vast amounts of data about individuals, families, groups and communities will inevitably over-reach and eventually undermine that system's legal and moral credibility. This type of data matching is shortsighted and will ultimately prove to be destructive to a system that in most cases serves and cares for clients very well.

All of us, clients and service providers, will have to bring pressure to bear on the government of BC to ensure that the proposed Integrated Case Management system receives thorough public scrutiny, rigorous legal, ethical and procedural review, and in the end only moves forward with a workable system of privacy protection.

Darrell Evans is the Executive Director of BC Freedom of Information and Privacy Association and Vincent Gogolek is their Policy Director.


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BCCPD UPDATE

BCCPD Calls for Cell Phone Driving Ban

Since May 2009, the BCCPD has actively called for legislation banning people from using cell phones and other handheld devices when they drive.

The BCCPD's membership and Board includes individuals who have been severely disabled in traffic accidents and are wheelchair users as a result.

We wrote to Premier Campbell and Kash Heed, Minister of Public Safety and Solicitor General asking for the implementation of a ban on the use of handheld communication devices by motor vehicle drivers. We also wrote to ICBC's Chief Executive Officer, Mayors and Councils across BC and our community partners. And we thanked the BC Association of Police Chiefs and Police Chief Jamie Graham for speaking out publicly in support of a ban.

The BCCPD is very pleased that the August 25th Throne Speech included a commitment from the government that it would "introduce legislation to restrict cell phone use while driving a vehicle to create a safer driving and pedestrian environment for all."

We would like to thank Premier Campbell and Minister Heed for this welcome news. Thank you also to all the Municipalities, community partners and individuals who have written to us to register their support for legislation banning people from using cell phones as they drive.

We will continue to update you on this important issue to all our communities.

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E-Health 2 • The law, risks and safeguards

by Sara A. Levine

In BC, our multi-billion dollar e-Health system is currently being built and, within a few years, all of your personal health information may be recorded in the government's databases.

What's new under Bill 24?

In 2008, the E-Health (Personal Information Access and Protection of Privacy) Act--Bill 24--was passed and became law in BC.

Bill 24 allows the BC government to create Health Information Banks or HIBs out of electronically-stored patient information and to use the information for a wide range of purposes. Under the E-Health Act, the Minister can designate any database belonging to a hospital, mental health facility, board of health or health authority as a HIB. The person administering the HIB will have the authority to collect patient information and to require personal health information to be disclosed to the databanks, unless the disclosure is prohibited by another law.

So, in the future, it may be difficult for your doctor to refuse to disclose your health information unless you specifically--and in advance--instruct your doctor not to disclose it to the e-Health system.

The E-Health Act also creates a detailed set of requirements for how and when personal health information can be disclosed for research purposes and creates a new committee--the Data Stewardship Committee--which is solely responsible for managing this disclosure. So long as the requirements of the law are met, your consent to the use of your personal information for health research purposes won't be necessary.

A system of data banks

E-Health is meant to be a "distributed system" which means it has many separate HIBs which will eventually be compatible, so they can work together and information can flow throughout the whole system.

The provincial government says that patient privacy is of major importance and that the system will have many privacy-protecting features built in, including firewalls and role-based access--which means people using the system will be able to see only the information they need to do their jobs. The lab technician will be able to see your tests in the lab test databank, but not your prescription information and so on.

However, it appears that the systems are being built before all the privacy rules have been completely defined. And even those privacy protections that are being built will depend in large part on the good behaviour of people who work in the system.

Really, the whole point of the system is to enable access. Everyone with access will be duty-bound not to look at your particular file unless they have a legitimate reason to see it. This includes providing you with health care, administering the Medical Services Plan, or addressing public health issues. They are not supposed to surf the databank or snoop in your file. There will be audit trails and triggers to notify supervisors if someone does something they shouldn't, but these work after the fact. Essentially, once they are allowed inside the HIB, the honour system will prevail.

And the fact is, the vast majority of health care professionals are highly ethical people who wouldn't dream of violating their duties. But, occasionally, someone with access to a system may not be so ethical or the system may be hacked. And unlike a privacy breach in your doctor's office, which may hold a few hundred or even a thousand patient files, when a large system holding several million records is compromised, the privacy of millions of patients could be breached.

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Protecting your information

So how can you control who sees your health information? Well, you can issue a "disclosure directive." The E-Health Act gives you a limited right to impose a disclosure directive on certain parts of your personal health information to restrict who can see and use that information.

A disclosure directive is a written instruction you create that works something like the PIN on your bank account. When you complete the forms and put a disclosure directive on your health information, the government "masks" all of your information in a particular Health Information Bank. This ensures none of it is accessible without using a keyword that you have chosen. Each time a new HIB is designated, you will have to create a new disclosure directive for that HIB. However, there are override abilities for emergencies and the mask may be limited, depending on what the HIB is designated for.

Will disclosure directives work?

Well, partly. As discussed above, you will not be able to make a single directive that applies to all your personal health information held by the government. Instead, you will need to make a new directive for each HIB.

And you cannot mask a particular record, such as a single test result or diagnosis. Your whole record in the HIB you select is masked. And, only information in HIBs can be masked at all. You cannot use a disclosure directive to mask your information unless it is in a HIB. Your directive can also be overridden in emergencies.

The future of health care includes electronic health records. We must work together to make sure that this future includes robust privacy protection too.

Sara A. Levine is a lawyer who provides advice on all aspects of privacy and freedom of information in the business and not-for-profit sectors.


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Where are the patients who have voted to spend scarce healthcare resources to build a vast, longitudinal database of citizen health information, with its unprecedented risk to patient privacy, rather than investing in more hospital beds and equipment; more health care providers, the reinstatement of needed "delisted" medications and diagnostic tests, more addiction and mental health services, etc.? Micheal Vonn, Policy Director, BC Civil Liberties Association

New Agency Guide helps travellers "Take Charge"

Take Charge of Your Travel is a free guide for travellers with disabilities who use airplanes, trains, as well as passenger ferries and buses that cross a Canadian or provincial border. It provides ideas on how to take advantage of accessible services and features in planning and conducting travel.

To help with the planning process, it includes a detachable reservation checklist that details possible services such as accessible seating, mobility and technical aids, and service animals. Take Charge is available on the Agency's Web site (www.cta.gc.ca). Copies of the new guide are also readily available in multiple formats for individuals and for distribution by organizations.

Canadian Transportation Agency
Toll-free: 1-888-222-2592 - TTY: 1-800-669-5575
Fax: 819-997-6727 - Web: www.cta.gc.ca
E-mail: info@otc-cta.gc.ca

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To Learn More

BC Freedom of Information and Privacy Association (FIPA)

FIPA has a wealth of information on citizen's rights to privacy, including their recent work on Integrated Case Management. http://www.fipa.bc.ca.

United Community Services Co-operative

Contact the Co-op to find out how to connect with others who have privacy concerns. Organizations may be interested in how to get engaged in this discussion. Call 604-718-8292, email info@ucscoop.com or visit http://www.ucscoop.com.

BC Civil Liberties Association

The BCCLA has done extensive work on e-Health. You can review their resources on their site at http://www.bccla.org/ehealth.html.

BC Persons with AIDS Society (BCPWA)

A Declaration of Medical Privacy Rights is included in an e-Health media kit prepared by BCPWA. Go to the media section of their website at http://www.bcpwa.org/section.php?section=about_us&page=media and click on "Government Wants Carte Blanche Over Your Personal Health Information."

BC's Big Opt Out

This website focuses on e-Health: what it is, how it may impact your privacy, frequently asked questions and more. http://www.bcoptout.ca.

Provincial Government

The BC government recently issued the forms you must use when you want to put a disclosure directive on your health information. You can find the forms at http://www.health.gov.bc.ca/ehealth/dd_forms.html.

Transition Online

All site/document links are also live in this online version of Transition.

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Thank you to the following organizations, companies and government departments who support BCCPD’s work on behalf of people with disabilities.

BC Association for Individualized Technology and Supports for People with Disabilities BC Government and Service Employees Union BC Hydro Employees Community Services Fund Committee BC Medical Services Foundation BC Ministry of Housing and Social Development BC Nurses’ Union BC Paraplegic Foundation BC Rehab Foundation Centre for Emergency Preparedness, Public Health Agency of Canada Coalition Against No-Fault in BC City of Vancouver CKNW Orphans’ Fund Emergency Management Division, BC Ministry of Health Health Sciences Association of BC Home Medical Equipment Dealers Association Human Resources and Skills Development Canada: Homelessness Partnership Strategy Kinsmen Foundation of BC and Yukon

The Kinette and Kinsmen Clubs of BC The Law Foundation of British Columbia Legal Services Society of British Columbia Notary Foundation Office of Disability Issues, Ministry of Human Resources and Skills Development Canada Province of British Columbia Provincial Health Services Authority Royal Bank of Canada (RBC Foundation) Spina Bifida & Hydrocephalus Association Status of Women Canada TELUS (Charitable Giving Program) TD Friends of the Environment Foundation United Way of the Lower Mainland Vancity Vancouver Coastal Health The Vancouver Foundation Variety - The Children’s Charity of BC Workers Compensation Board of Nova Scotia WorkSafe BC

The Importance of Play

by Nancy Chamberlayne

Multiple Sclerosis has curtailed my ability to play. As facilitator of Victoria's Living Well with MS Self-Help Group, I asked others living with MS if they felt the same way.

We defined play as things that make us feel happy, joyful or cheerful. Some said that play made them feel more alive; others lived in the moment taking pleasure in the small things. We found that we focused on these emotional aspects of play, rather than the physical.

Most of us have learned to play differently and creatively. We re-created how we recreated. I can no longer jog, but I can jog in the water by wearing a buoyancy belt. Others exercised in their wheelchairs or scooters.

The computer is an excellent toy. Games like bridge, reading, doing research and emailing friends are all forms of play. Talking books, movies, TV, the radio and music provide entertainment. One woman, who used to dance, choreographs routines in her head as she listens to music. Another challenges his intellect with the game of chess.

Learning to adapt is a key component for continuing to play. Another woman said she is willing to rest for three days just to be able to experience the pleasure of an activity. Many of us use a scooter or wheelchair to get around. In my case, to experience park trails again, I scooter hike. Someone else participates in the game of wheelchair curling. The opportunities are endless.

Pets bring us joy. Going for a doggie scooter walk, giving a back scratch and throwing a ball are all considered play by both the pet and the owner. This also applies to assistance dogs who are "off duty."

Humour is an important type of play. Many of us have a black sense of humour about our disease and what it does to our bodies. Because MS can cause poor balance and co-ordination, we often think we need to wear a t-shirt that says, "I'm not drunk."

The common thread in our groups was the enjoyment of socializing with friends and family--meeting for coffee, lunch or dinner, going for a scooter walk, talking on the phone or just hanging out at the MS Centre. Two of our members even like to engage strangers in conversations as they cruise the city in their scooters.

We do what we can to get out there and play. I have learned that the physical activities of play may have changed, but the emotional rewards are the same.

I would like to thank the members of Victoria's South Vancouver Island Chapter's "Living Well with MS" Self-Help Group for their contributions to this article.

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Help Transition Go Green

Now you can join other readers who have switched from receiving Transition in print to reading us electronically. The new options are:

1. receive a colour PDF by email
2. download a colour PDF from our site
3. read Transition in our new online version, complete with clickable links and resources, and often web extras not in the print version

How can I sign up?

Glad you asked! Follow step 1 or 2 below:

1. Renew your Transition subscription by clicking here and select email or online version.
2. Contact Val at the office and let her know “I want to switch!” to:
   • receiving Transition by email. Be sure to provide your email address!
   • reading Transition on the website

Contact Val by email at feedback@bccpd.bc.ca or by phone at 604-875-0188.

And, if you still want to receive Transition by mail, that’s ok too.

Save a tree, save BCCPD money and still receive all Transition issues.

A big thank you to subscribers who have already switched!

 

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Using Online Charting

I am a social worker who has been charting online--using a type of e-Health system--for most of the past three years. During that time I have been employed in mental health, residential care and hospital social work. I'd like to share some of my personal observations.

BC's Health Authorities have embraced electronic charting and lab ordering because they are faster, more efficient and generally create less paperwork for all staff. Health histories are available quickly which helps providers who need to make rapid or difficult treatment choices. Distance between a patient and a doctor can be addressed by interviewing over a video link, sharing documents over a fax line and reading any information already available on the electronic health record.

For any nurse, case manager or other practitioner, electronic charts are brilliant. All disciplines can search for information, all records are entered and no time or energy is lost between needing to know something and finding it. Entries in a person's mental health chart include things like: what the person is experiencing, what may be needed next, how they and their families want to be supported, and which professionals have seen the person.

The advocates who oppose e-charting tend to be concerned that people's personal health and demographic information will be more readily available to any staff. There are many reasons why a person might want to keep health information private--to avoid upsetting loved ones, alarming a potential employer or because of a disagreement about the diagnosis a person has received. Electronic records could possibly be misused.

No system is perfect. In the systems I have worked with over the last three years, the software is new. Sometimes it is "down" or has "crashed" or documents have been temporarily lost. Sometimes we have needed to return to the paper chart for a few minutes or hours.

The health authorities' massive computer systems are constantly monitoring staff use. I have known staff to be "reminded" that personal work must not be done on company time. Policy on this issue means that the guilty person will be disciplined up to and including dismissal.

There are pros and cons for keeping electronic records, but, either way, I believe they are here to stay.

Name withheld on request

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A Team Effort This Transition was a collaborative effort and we're very grateful to the following people for their generous participation in this project. Content Tim Beachy, Chief Executive Officer United Community Services Co-operative Darrell Evans, Executive Director BC Freedom of Information and Privacy Association Vincent Gogolek, Policy Director BC Freedom of Information and Privacy Association Sara Levine, Barrister and Solicitor Privacy Compliance Consulting		Glyn Townson, Board Member BC Persons with AIDS Society Micheal Vonn, Policy Director BC Civil Liberties Association Legal Supervisor Gerald J. Fahey, Barrister and Solicitor Macdonald Fahey Edition Funding The Law Foundation of BC

What Can You Do?

We hope we've helped to explain why current plans to gather and use your information are important. And we hope you want to know more and ask questions about these changes that will affect your privacy rights. So, what can you do?

1. Ask questions and keep learning about e-Health and Integrated Case Management. Use the resources listed in this Transition for more information and helpful tips.
2. Know your privacy rights. You have rights under the law that guarantee privacy of your information.
3. Talk to friends and colleagues. Send them to our website to read this Transition and find other resources.
4. Talk to your doctor about the privacy of your health information.
5. Tell your MLA your concerns about the privacy of your information and ask what they will do to help protect your information.

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Community News

Special Olympian at BCCPD

We're proud to have a Special Olympian at the BCCPD. Volunteer Joyce Groenevelt won a silver medal in the 10-pin Team Bowling competition, held in Abbotsford, BC this July. In the winning game, Joyce bowled an amazing 216, including 5 strikes.

"I feel really happy," Joyce said. "I had a lot of fun and winning the medal was a big surprise." Congratulations Joyce!

Farewell Crackers

A long-time friend and canine member of BCCPD, Crackers, passed away May 16th. Crackers was a Lancashire Heeler and a certified hearing assistance dog for Dennis Robertson.

Readers of Tips for Living Well newsletter may remember a series of articles Dennis wrote about his adventures with Crackers.

Many of us at BCCPD became good friends with Crackers over the years. Every couple of months, we received a "Cracker card"--Crackers in bunny ears, Crackers in a Santa suit, Crackers surrounded by pumpkins. On the back, Dennis would write a story about Crackers' escapades at their ranch in the interior of BC.

Crackers was beside Dennis through good times and bad, whether it was enduring difficult medical treatments, advocating for disability issues in the community or supervising the annual Granddad's Camp with Dennis' grandchildren.

We are going to miss receiving our Cracker cards and will remember him fondly as a member of the BCCPD Pet Squad.

Institute's E-Newsletter Debuts

The Family Support Institute (FSI)works to strengthen and support families faced with the extraordinary circumstances that come with having a family member who has a disability. They are a family-led organization that believes "informed, involved, and confident parents are the most effective agents for social change on behalf of their children." FSI has launched an e-newsletter and welcomes your comments, contributions or subscriptions. Visit http://www.familysupportbc.com/.

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Transition Information and Acknowledgements
Founding Editor Richard A. Watson Editor/Layout Ann Vrlak Cover Design Fiona Gamiet Proofreaders Shelley Hourston Jane Dyson Fundraising Team Jane Dyson • Sam Bradd • Shelley Hourston Alternate Formats Val Stapleton • Eleanor Pasholko Admin Assistant Elena Kubaseck-Berry Contributors Jane Dyson • Shelley Hourston Mailout Coordinator Janis Walsh	Transition is published four times a year by BC Coalition of People with Disabilities. Subscriptions are $20/year. We welcome articles, graphics and creative writing for consideration. The editors reserve the right to edit and/or withhold material from publication. We are pleased to see Transition material republished without prior permission, with these conditions. Please credit “Transition, BC Coalition of People with Disabilities” and the edition date. Thank you. Editorial Statement The views and opinions expressed within the pages of Transition are not necessarily those held by the total membership or Board of Directors. The material presented herein is meant to be thought-provoking and to promote dialogue. Transition is a forum to share information within the disability community, and with government and the general public. It is also an opportunity for people with disabilities to display creative talent. Disclaimer Any firm or company advertising in Transition is for our readers’ benefit and does not constitute an endorsement by the BCCPD. Canadian Publications Mail Product Sales Agreement No.40051676
Privacy Statement The BC Coalition of People with Disabilities (BCCPD) respects and upholds an individual’s right to privacy and the protection of their personal information. The BCCPD is committed to ensuring compliance with British Columbia’s Personal Information and Protection of Privacy Act (PIPA). The BCCPD will inform people what personal information it collects about people and why. It will store information securely and identify who has access to the information it collects. It will inform people what information will be shared, with whom, and why. BCCPD Privacy Officer: Sam Bradd (604) 875-0188; Alternate: Jane Dyson (604) 872-1278; privacyofficer@bccpd.bc.ca.

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