What do consumers think about health information infrastructure (HII)? Are they aware of the growing activity in the HII field? Are they supportive? What services do they want? What are their concerns?
Fortunately, there is a growing body of consumer polling data that addresses these issues. In this article, I will review what I consider the key highlights and refer you to the sources of this information so that you can explore further on your own. I’ll conclude by describing an excellent set of consumer HII principles that already has substantial organizational endorsement.
Of course, consumers are the ultimate beneficiaries as well as a critical user group for HII. The idea of consumer access to health care information has been widely discussed over the past few years. Also, the concept of the electronic personal health record (EPHR) – which allows consumers to enter their own relevant health-related data — has become very popular in health information infrastructure discussions (e.g. see the report from the Personal Health Working Group of the Connecting for Health project)
Providing consumers with access to their own electronic medical records, the ability to enter additional information about their health, electronic communication with their providers, customized reminders about prevention and treatment, and access to the latest authoritative medical news and information are all very important components of HII that will help to improve the health of individuals and populations.
I find it useful to divide the consumer attitudes about HII into three categories: 1) the overall system; 2) value & uses; and 3) privacy & trust.
What do consumers think about a national system of electronic medical records?
Consumers are very supportive of the idea of a nationwide health information exchange. Seventy-two percent of consumers like this idea (composed of 38% who strongly favor it, and 34% somewhat in favor), while only 23% are against it (12% who strongly oppose & 11% somewhat opposed). This is a large and, in my view, remarkable majority who are supportive of the idea of electronic health records on a nationwide basis. I believe it is remarkable because this has not really been a prominent issue for the general public.
Even more interesting are the percentages of consumers who feel that key issues should be “absolute top priorities” in the development of a nationwide health information exchange. They show a high level of public understanding and support of the key elements necessary to protect health information: authentication (91%), auditing of access (81%), and permission-based access to the information (79% for general access & 50% for access control of specific items so sensitive material such as mental health visits can be suppressed if desired).
Consumers also express a high level of concern about discrimination on the basis of health information (72% want prevention of this to be “absolute top priority”), as well as a strong desire to keep employers away from their records (68%). A majority of consumers (53%) want access to their own records as an “absolute top priority.” Finally, 38% of respondents expressed a desire for independent governance with public accountability and full consumer participation.
It is clear from this information that consumers are both well-informed and savvy about these issues.
What is the value of HII to consumers? What would they use it for?
Overwhelming majorities of consumers agree that EHRs improve care by reducing medical errors and improving quality (80%) and are very helpful for medical research (81% indicated that using de-identified data from EHRs provides up-to-date medical information and knowledge). Consumers would use HII to check for mistakes in their medical record (69%), check and fill prescriptions (68%), get results over the Internet (58%), and exchange secure, private email with their provider(s) (57%).
A large majority (71%) of consumers believe that getting medical records quickly in an emergency could mean the difference between life & death. Interestingly, in this same group of consumers, 53% said they had never thought about this before! Closely related to this, 93% of consumers want emergency room doctors to have access to their electronic medical records to reduce treatment errors.
Finally, 52% of consumers said that they would be willing to pay $5/month or more to have their medical records stored electronically. Clearly, consumers recognize that having their medical records in electronic form has real value.
What privacy concerns do consumers have about HII and electronic health records?
Two-thirds of consumers said they are concerned about the privacy of their medical records (36% very concerned & 31% somewhat concerned). Of note is that 34% are NOT concerned (which is surprising to me).
In the most revealing finding in these recent surveys, 13% of consumers admitted to using one of the following four “information hiding” behaviors: 1) Asking a doctor not to record a health problem or record a less serious or embarrassing diagnosis; 2) going to another doctor to avoid telling their regular MD about a health condition; 3) personally paying for a test, procedure, or counseling rather than submitting a claim out of concern someone else would access the information; or 4) deciding not to be tested out of concern that others might find out about the results. While nearly all health care practitioners are aware of these behaviors (and other similar ones), this is the first time I’ve seen them documented in a survey. Also, it seems likely that even more consumers actually do this than the 13% who admit it.
Finally, who would consumers trust to be the online host of their electronic medical information? The most popular option is a physician-sponsored web site (57%). Other options are favored by small minorities: health insurer 14%, government 12%, commercial 8%, non-profit 7%, and employer 2%. This may mean problems ahead for those companies that are sponsoring “personal health record” initiatives for their own employees.
Consumer Principles for HII Development
Recently, the Markle Foundation’s Connecting for Health project worked with representatives of 14 other organizations to develop a thoughtful and comprehensive set of seven consumer principles for HII:
These important principles should be incorporated into every effort to develop HII, as they are both consistent with the views expressed in the polling data, and also address the key concerns of the public. Developers of community HII systems will find it much easier to engage consumer support by following them.
Next time — Measuring HII progress in communities