Transforming the Privacy Dialogue
February 10, 2009
The current debate regarding privacy considerations in health information technology (HIT) needs a significant reorientation. It is not productive to consider privacy and access in opposition. Traditionally, increased access by consumers, healthcare professionals, insurers, and researchers is seen to decrease the level of privacy for the individual. This has obscured what truly matters: better care for patients and empowerment of individuals to make informed healthcare decisions. With decreased time per patient visit and increased healthcare costs, HIT provides a unique opportunity to create a holistic healthcare system that involves the patient and provider. Is there a way to achieve privacy and access simultaneously, emphasizing their equal importance to improving the healthcare system?
Two concepts are widely shared:
- Health IT is a crucial part of our healthcare delivery infrastructure; better HIT is essential for increasing quality and decreasing costs.
- Reasonable privacy protections are vital to assure consumer trust.
Yet the latter concept has historically devolved into a contentious debate over privacy and the practical limits of confidentiality. Two commonly heard positions are:
- “We’re strong proponents of privacy, we just don’t want onerous regulations that impede the provision of patient care or the realization of promising research.” This position is often paired with the following conclusions, among others:
- Affording consumers the right of notice and consent could inhibit care, and therefore should be omitted from public policy except in rare instances;
- Accounting of all disclosures of personal information would be impractical, and therefore should not be imposed on healthcare record holders;
- States’ rights to embrace more stringent privacy laws than a federal standard impose intractable challenges to the flow of vital information, and therefore should be over-ridden for the common good.
“We welcome HIT innovation, but we must include adequate protections for the consumer.” Accordingly, this position is often paired with a very different set of conclusions:
- Receiving any remuneration for sharing, disclosure or use of personal health information, directly or indirectly, could lead to abuses by for-profit entities, and therefore should be made illegal;
- Informed consent to share health information is the only vehicle capable of ensuring individual control over private data, and therefore should be required;
However, these positions can be reconciled by focusing on the need for informed decision-making and innovative use of consumer focused technology.
Individuals need access to their health information to enable informed decision-making.
- Individual definitions of privacy and confidentiality are unique and complex: Age, ethnicity, work, lifestyle, and/or community may influence their meaning. The setting (primary care vs. specialty care), the environment in which care is received (clinic, private office, hospital, or emergency room), and the system that is being referred to (healthcare, public health, research, or the test and therapeutic development systems) may also play a role. Determinations about health, including the privacy and confidentiality of health information, must be individualized.
- Individuals need access to their medical information in order to make healthy choices. The current system of disconnected services and inaccessible records hurts the patient and does not allow full engagement of an individual in their care.
- Consumer-driven healthcare and shared clinical decision-making are shaping future health systems. Gathering health information is largely dependent on patient participation and sharing, and educated consumers make a significant impact on their health and that of their family members.
Technology can be developed that enables privacy, confidentiality, and access.
- This era of information system development and social networking is the foundation for privacy and access technology, which will provide us with new solutions for privacy health policy and allow individuals to determine what is appropriate use of their health information.
- Next generation technologies must be paired with a next generation understanding of privacy. We must evolve past consent to embrace brand new opportunities for patient empowerment and improved flow of information between all partners in health.
- As support for health information technology continues to gain momentum in Congress, we must embrace the time-honored creed of medical practitioners dating to Hippocrates, “to help, or at least to do no harm.” Our efforts should neither hurt the individuals we intend to help, nor stifle the innovation and promise of health IT.
About Genetic Alliance
Genetic Alliance transforms health through genetics, promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance brings together diverse stakeholders that create novel partnerships in advocacy; integrates individual, family, and community perspectives to improve health systems; and revolutionizes access to information to enable translation of research into services and individualized decision making. For more information about Genetic Alliance, visit: http://www.geneticalliance.org