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Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care Privacy Conference September 23, 2002 Toronto

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Page 1: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Building Privacy into Health Care Technology

Mike GurskiSenior Policy and Technology Adviser

Information and Privacy Commissioner/Ontario

Health Care Privacy ConferenceSeptember 23, 2002

Toronto

Page 2: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

The Security/Privacy Dilemma

Page 3: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Health & IT issues

Electronic health records Online prescription renewals & scheduling Telemedicine Integration of health networks Increasing use of data by third parties Public Private Partnerships / outsourcing Increasingly literate patients

Page 4: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

The PDT

A simple, plain-language tool

Free of charge, self-administered

Available on paper, online, or as a CD-ROM

Page 5: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

The Privacy Security Relationship Privacy as personal control Security as organizational control Overlaps but distinct. Examples of the differences

Page 6: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Electronic Record Keeping in the Healthcare Sector

Potential to increase quality of care for patients

Canadians are amenable to the idea of computer storage of health records

Page 7: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Electronic Record Keeping in the Health Care Sector

Very sensitive PI Privacy risks Must respect Privacy Design Principles

Page 8: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

HEALTH PETs

Privacy enhancing technologies have already been implemented into some health care systems. There are a number of case studies that highlight progress in this arena:

1. Hippocratic Database

2. Dutch HIS

3. IBM's Zurich Research Laboratory

Page 9: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

HIPPOCRATIC DATABASE

Developed by IBM Research

The database negotiates the privacy of information between a user and an organization. The database owner sets an information storage and retrieval policy which database donors can accept or deny.

Page 10: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Traditional Database Characteristics Standard Database

functions:– Manage persistent data

– Efficient access of large volumes of data

– Managed access, manipulation

– Resiliency

Page 11: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Hippocratic Database Characteristics ‘And about whatever I

may see or hear…I will remain silent … unutterable’

– Excerpt from Hippocratic Oath

Incorporation of privacy values found in legislation, FIPs, policies.

Straw man focuses on purpose for data collection.

Page 12: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Strawman Test

Ensure that a customer’s privacy is supported by the Hippocratic Database, including against attacks by authorized staff

Page 13: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

How it works

Before data is collected, the types of information to be obtained and basic rules about how the data will be used are decided.

These rules include who should have access to the data and how long it will be retained.

Page 14: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

How it works (2)

When a user enters information, an application at the user end will interact with the database to check that its data privacy policies are acceptable to the user, who has already programed his or her preferences into the application.

Once verified, data is transferred from the user to the database

Page 15: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

HIPPOCRATIC DATABASE

Architecture for the Hippocratic Database is to be based on 10 guiding principles:

Purpose specification, consent, limited collection, limited use, limited disclosure, limited retention, accuracy, openness, and compliance.

Page 16: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

The Architecture Continued Other functions of the Hippocratic Database:

– A tool (Privacy Constraint Validator) tests the business’ privacy policy against the customer’s preferences.

– The data is stored together with that preference.– Data access is limited to “authorized use” and

“authorized user”. A ‘Record Access Control’ tool would automatically check a query and the user before allowing the data to be used.

– Tests for anomalous patterns of requests would act as a control for an authorized user querying data for an unauthorized purpose.

• E.g., customer service rep attempting to steal e-mail addresses.

Page 17: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Potential Benefits

Provide privacy controls within database, not just at policy level;

Can dovetail into P3P, mirroring privacy preferences in the database structure itself;

Provide level of trust to patients and customers regarding protection of their PI.

Page 18: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

DUTCH HIS (Hospital Information System)

“Privacy engineering in the health informatics field has resulted in system designs that can guarantee highly conditional linkabilities of identity in terms of access control.”

Gilles van Blarkom Office of the Dutch Data Protection Registrar “Guaranteeing requirements of data‑protection

legislation in a hospital information system with PET” The British Journal of Healthcare Computing and Information

Management

Page 19: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

BACKGROUND

Case study looks at how patient identification numbers can be encrypted to create a pseudonym in a Hospital Information System (HIS)

- true identities of patients are hidden to unauthorized users of the system.

- system ensures compliance with EUnion data protection legislation

Page 20: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

TYPICAL PROCESS

An example of the encryption used in the Dutch HIS:

1. After successful log-in by user at a PC client, a process is started to select the patient whose medical record is to be accessed;

2. Once the correct patient is identified, the unique identifying number is passed from the server to the client, this number is encrypted to a value being the pseudo-identity of this patient;

Page 21: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

TYPICAL PROCESS cont.

3. In the client, this number is encrypted to a value being the pseudo-identity of this patient;

4. Using this pseudo-identity, the required table containing the medical record can be accessed

Page 22: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Creating a Secure Environment

PC (Client)

Server

Client-Server architecture

Privacy-incorporated database

1

3

42

Page 23: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

OUTCOME

- A HIS using this technique conforms to all requirements of the mandatory data protection called for by the EU legislation.

- The encryption process is performed at no measurable cost and has no adverse effect on the performance of the application.

Page 24: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

IBM ZURICH RESEARCH CENTRE

Michael Waidner

IBM Privacy Research Institute

Switzerland

Page 25: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

BACKGROUND

IBM's Zurich Research Laboratory is the European branch of IBM Research and is located in Switzerland. The lab comprises three scientific departments:

- Communication Systems;

- IT Solutions; and

- Science & Technology.

Michael Waidner is manager of the Network Security and Cryptography Research Group.

Page 26: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

IBM Privacy Research Institute

Within the research lab is the Privacy Research Institute, established in 2001 to develop the necessary technologies for enterprises that enable the transition from today’s privacy-unaware or even privacy-intrusive ways of doing e-business to privacy-enabling ways.

Page 27: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

IBM Privacy Research Institute

The Privacy Research Institute has created a global research program to develop privacy-enhancing services and technologies. It addresses issues such as:

1. Enterprise Privacy Architecture 2. Enterprise Privacy Policies3. Privacy-enhanced management of p.i. 4. Privacy-enhanced XML document access control5. Privacy-enhanced PKI6. Privacy-enhanced data mining

Page 28: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Enterprise Privacy Architecture

                                              

Enables enterprises to provide well-defined levels of privacy to their customers.

This architecture identifies privacy-enabling security technologies as well as all components necessary for enterprise privacy management.

Page 29: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Enterprise Privacy Policies

A policy language that enables enterprises to describe their privacy practices;

Policies are associated with all data collected;

This "sticky" policy paradigm mandates that

1. policy sticks to the data;

2. travels with it;

3. can be used to decide how the data can be used.

Page 30: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Privacy-enhanced management of personal information

Software components that enable individuals and enterprises to manage, use, and distribute personal data according to privacy policies;

Also supports contacting the data subject for consent, and allowing data subjects to access/update their data and policies.

Page 31: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Privacy-enhanced XML document access control

Enables individuals to specify privacy preferences as access control policies for XML-encoded personally identifiable information;

Ensures that each element in the document is securely updated.

Page 32: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Privacy-enhanced pseudonym-based public key infrastructure

(PKI)

Digital signatures and public-key infrastructures (PKIs) help ensure personal data is only given to people deemed trustworthy.

The system idemix (identity mix) enables an individual to establish a specific fact. This allows only information that is necessary, to be released.

Anonymity can be revoked if necessary.

                

Page 33: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Privacy-enhanced data mining

Allows users to randomize information in their records;

Preserves privacy at the individual level while still building accurate data mining models.

Page 34: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Translating Privacy Requirements into

Technology

Page 35: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care
Page 36: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Step 1:

Define privacy expectations of the public and identify legislated requirements:– Survey polls and reports that discuss public

discontent;– Compare and understand privacy legislation

within your jurisdiction;– Standard privacy principles.

Page 37: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Step 2:

Develop privacy policies and principles:– Free diagnostic tools:

• Privacy Diagnostic Tool www.ipc.on.ca/english/whatsnew/newsrel/08601nr

– Privacy principles and standards:• Fair Information Practices (

www.cdt.org/privacy/guide/basic/generic)

Page 38: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Step 3:

Undertake an assessment of human and informational resources with a focus on personally identifiable data (collection, processing, management, flows and storage):– What does your organization possess

• Human resources, budget size, a plan;

– What is required • More people, more tools, more strategic modeling.

Page 39: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Step 4:

Undertake a threat risk assessment by completing a Privacy Impact Assessment (PIA):

• Management Board Secretariat’s PIA – www.gov.on.ca:80/MBS/englis/fip/pia/pia.pdf

• “The Value of Privacy Engineering” by Steve Kenny and John Borking – elj.warwick.ac.uk/jilt/02-1/kenny.html

Page 40: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Step 5:

Deploy methodology for privacy risk management at the systems level:– Use results from the PIA analysis to

communicate and transfer policy/legal vulnerabilities into technological solutions

• Design rules and controls around personal information, linkability, access, use, accountability and delineation of business processes into the architecture of the network;

• Rules should depend on data type (level of sensitivity etc.).

Page 41: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Step 6:

Introduce the rules and controls developed in the previous step at the source code level:– Apply the amalgamated design into the already

existing system or as foundation for the beginnings of a system

Page 42: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

Step 7:

Deploy and audit, through a model of continuous improvement. Review expectations and requirements:– Always ensure from a policy, legal and

technological perspective your organization and all its systems/tools are privacy compliant;

– Train all staff (IT, marketing, engineers, senior executives) to be privacy sensitive and preventative solution providers.

Page 43: Building Privacy into Health Care Technology Mike Gurski Senior Policy and Technology Adviser Information and Privacy Commissioner/Ontario Health Care

How to Contact Us

Mike Gurski

Information & Privacy Commission/Ontario

80 Bloor Street West, Suite 1700

Toronto, Ontario M5S 2V1

Phone: (416) 325-9164

E-mail: [email protected]

Web: www.ipc.on.ca