Copyright © eHealth Initiative, 2006

Physicians and Health Information Exchange (HIE)

The Doctor-Patient Relationship Privacy and Information Sharing

© eHealth Initiative & Foundation, 20062

A day in the life scenario

Jane is a 45 year old patient of yours in the office for a general physical. At the end of the visit, she asks you for your opinion on a new service offered by her employer’s health plan. According to Jane, her employer now offers her a personal health record that will track all her health data from health insurance and medical visits and she can even enter information herself. She wants to know what you think? Do you have other patients who use this? She wants to know if you can look at it with her jointly in office visits or if you will be entering data. She says that not everything she tells you in the office is information she wants her employer to know.

What might you want to discuss with Jane regarding health information exchange?

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Today’s Reality…• Data is stored in silos, across multiple stakeholder groups• Clinical research and public health is hindered by paper-based,

fragmented systems – costly and slow processes• Data is required from multiple sources to have timely and effective

clinical decision support• Public health agencies are forced to utilize phone, fax, and mail to

conduct public health surveillance, detection, management, and response

• Physicians spend 20 - 30% of their time searching for information…10 - 81% of the time, physicians don’t find the information they need in the patient record

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Why Health Information Exchange…

Health information exchange (HIE):• The mobilization of healthcare information electronically within a region or community.  • Facilitate access to and retrieval of clinical data across organizations to provide safer, more timely, efficient, effective, equitable, patient-centered care.

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HIE and Privacy:What Do Consumers Think?

• Americans support the creation of a national Health Information Exchange or network for doctors and patients ( 72% show strong and consistent support regardless of political affiliation, age, education, or socio- economic status)§ 60% are interested in a secure online personal record

• Americans believe an electronic exchange of health information would enhance the quality and efficiency of the health care system

Markle Foundation : Attitudes of Americans Regarding Personal Health Records and Nationwide Electronic Health Information Exchange, October 2005

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HIE and Privacy:What Do Consumers Think?

Consumers were asked to rate the attributes of an HIE network and revealed the following “absolute high priorities”:§ The identity of anyone using the system would be carefully

confirmed to prevent any unauthorized access or any cases of mistaken identity (91%)

§ An individual would be able to review who has had access to their personal health information (81%)

Markle Foundation : Attitudes of Americans Regarding Personal Health Records and Nationwide Electronic Health Information Exchange, October 2005

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HIE and Privacy:What Do Consumers Think?Consumers were asked to rate the attributes of an HIE network and revealed the following “absolute high priorities”:

§ Only with an individual’s permission could his/her medical information be shared through the network (79%)

§ Employers would not have access to the secure health information exchange networks (68%)

Markle Foundation : Attitudes of Americans Regarding Personal Health Records and

Nationwide Electronic Health Information Exchange, October 2005

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HIE and Privacy:What Do Consumers Think?

“There’s a lot of sensitivity about keeping information safe on this network. Consumers need to know that we will have vigorous ways to secure the network and protect their identity. There is a lot of concern about the potential for inappropriate people to see their information—about what we in the industry call ‘authentication.’

David Lansky, Markle Foundation, eHealth Initiative, EPAB Issue Brief #3, October 2005

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HIE and Privacy:What Do Consumers Think?

“I think the HIE would be for the most part a good

thing. As long as certain security access

guidelines are set up.”

Consumer response, eHealth Initiative, Public Opinion Strategies focus group,

June 2006.

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HIE and Privacy: What Do Doctors Think?

Physician care delivery benefits of HIE include:• To improve patient safety by allowing patients and providers

to make informed decisions based on a more complete view of a patient’s medical history.

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HIE and Privacy: What Do Doctors Think?

“I would want my patient to know exactly who might see information that might affect them, especially insurance companies or employers.”

Wisconsin Health Information Exchange physician survey 2005

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Why Privacy is Important…

Privacy is important to consumers§ As a fundamental component of high-quality, patient-

centered healthcare.

When individuals worry about misuse of their personal health information, they take steps to circumvent the system to protect their privacy.

Source: California HealthCare Foundation and Consumers Union. Promoting Health, Protecting Privacy: A Primer. Oakland, Calif: California HealthCare Foundation and Consumers Union; January 1999.

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HIE and the Doctor-Patient RelationshipTrust

§ 90% of patients trust physicians to keep their health information secure*Credibility and honesty

§ Emphasize the precautions taken to protect their private information.Listening and open communication

Privacy and security policies must be agreed upon before electronic exchange of information across organizations begins.

§ Experts note that breeches will occur even with high level of security. Source: MedicAlert® backs new health privacy rules with Gallup survey showing broad public support. MedicAlert® Web site. March 21,

2001. Available at: http://www.medicalert.com. Accessed July 20, 2001.

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HIE and the Doctor-Patient Relationship

“We need to send the clear message that this is a tremendous opportunity to improve their healthcare, and at the same time communicate that we will do what is necessary to protect their information and not gloss over the importance of privacy and security.”

David Lansky, eHealth Initiative, EPAB Issue Brief #3, October 2005

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HIE and the Doctor-Patient Relationship

Providing the best care§ HIE benefits for personal and public health

Advocacy and Education§ Opportunities to voice patient’s concerns

Maintaining relationships for the future

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HIE and the Doctor-Patient Relationship

Do my patients have a choice?§ They have the right to ask for opt-out of any information sharing that is not

required by law, ask for audits, and ask for access.

What if my patient doesn’t want to share data?§ Listen first, understand their fears and concerns.§ Articulate benefits at an individual patient level.§ What is means to the patient and what it means to their family.

• Improving lives, safer health care, more efficient and higher quality care through improved communication.

§ Experiences of others show that this is an interactive process that cannot be rushed.

§ Respect patient choice.

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5 Common Principles of Fair Information Practices

Notice§ The existence and purpose of record-keeping systems must be

known to the individuals whose data is contained therein. Choice

§ Information must be collected only with the knowledge and implicit or explicit permission of the subject, used only in ways relevant to the purpose for which the data was collected, and disclosed only with permission of the subject or in accordance with overriding legal authority (such as a public health law that requires reporting of a serious contagious disease).

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5 Common Principles of Fair Information Practices

Access§ Individuals must have the right to see records of information about them and to

assure the quality of that information (accuracy, completeness, and timeliness). In healthcare, records are rarely deleted or replaced, but this principle implies that there is at least a due process for individuals to amend poor quality information about them.

Security§ Reasonable safeguards must be in place for the confidentiality, integrity, and

availability of information.Enforcement

§ Violations must result in reasonable and consistently applied penalties to deter violators and in reasonable mitigation efforts to offset the effects of a breach as much as possible.

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HIE and the Doctor-Patient Relationship

Summary:§ Both patients and physicians believe there are benefits

to be received from electronic health information exchange

AND§ Both patients and physicians have concerns about

privacy and security of electronic health information exchange

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HIE and the Doctor-Patient Relationship

Summary:§ Physician stakeholder role in HIE:

• Discuss and agree upon policies for privacy and security early in HIE development.

• Local culture and community acceptance of HIE functionality must be reflected in policies.

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HIE and the Doctor-Patient Relationship

Summary:§ Physician role with patients:

• Open communication and honesty• Understanding patient concerns• Expressing benefits to the patient at an individual and family

level• Trust and respect the patient

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Engaging Physicians in Health Information Exchange

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