NUMBER 27

Developing an Electronic Health Information System for High-Quality Cancer Care

The delivery of cancer care faces significant challenges in light 

of increased demand due to an aging population, decreases in 

the number of health care providers who are skilled in providing 

cancer care, rising care costs, and other factors. In 2013, the 

Institute of Medicine released a report on the state of cancer 

care delivery in the United States and recommended strategies 

for improving care to be more patient-centered, accessible, 

coordinated, and evidence-based. 

Six foundational components were deemed essential in improving 

knowledge and informing medical decisions. One of these six 

priority areas is “developing an ethically sound learning health 

care information technology system for cancer care that enables 

real-time analyses of data from cancer patients in a variety of care 

settings.” The system envisioned does not yet exist, but would

build upon existing electronic health information technologies

(e.g., electronic health records, cancer registries) to better integrate 

and use cancer health information. The U.S. Department of Health 

and Human Services (HHS), with assistance from professional 

organizations, has been encouraged to support the development 

and integration of such a system. 

HHS, through the Office of the National Coordinator for Health 

Information Technology (ONC), has led nationwide efforts to 

create private, secure health information systems supporting the 

widespread, meaningful use of health information technology since 

the passage of the Health Information Technology for Economic and 

Clinical Health (HITECH) Act in 2009. In addition to incentivizing 

providers to adopt useful information technology strategies, ONC 

has also sought to establish standards and guidelines for the privacy 

and security of private health information.

Since 2008, HINTS has investigated the public’s perception and use 

of electronic health information and technology. For example, in 

2008 roughly 56 percent of American adults reported a perception 

that their providers were maintaining information in a computerized 

system. By 2013, that percentage rose to 85 percent. When asked 

in 2008 how important it was for health care providers to share 

information electronically, 48 percent indicated that such a capability 

was “very important.” That percentage rose to 61 percent in 2013.

• 

• 

• 

• 

Do any of your doctors

or other health care

providers maintain your

medical information in

a computerized system? 

0

20

40

60

80

100

2008

% Yes

Survey Year

2013

How important is it to

you that your health

care providers are able

to share your medical

information with each

other electronically? 

2008

% Important

Survey Year

2013 0

10

20

30

40

50

60

70

80

Quick Facts

In 2013, 78% of office-based physicians used any type of 

electronic health record (EHR) system (48% were using systems 

that met the criteria for a basic system), up from 18% in 2001.

Adoption of basic EHR systems and any EHR system varies widely 

across states. The percentage of physicians with basic systems by 

state ranged from 21% in New Jersey to 83% in North Dakota.

In 2013, nearly 6 in 10 nonfederal, acute-care hospitals had 

adopted at least a basic electronic health record system. 

In the United States, more than 1.6 million new cancer cases are 

diagnosed each year, and by 2030 cancer incidence is expected 

to rise by 45 percent to 2.3 million new diagnoses per year.

In this HINTS Brief, we describe the public’s perceptions about the security and privacy of their electronic health information.

85% 85%

56% 56%

61% 61%

48% 48%
• 

• 

• 

• 

Concern About Security, Privacy, and Control Over Electronic Health Information

A study using HINTS 2012 data examined the public’s perceptions about the security and privacy of their electronic health information; 

their perceived control over the collection, use, and sharing of this information; and the likelihood of their withholding health 

information from their health care providers.

Privacy and security of electronic health information

Three-quarters of respondents were very or somewhat 

confident that safeguards were in place to protect their 

electronic health information. Sharing information between 

health care providers increased concern. Nearly two-thirds 

(65 percent) of respondents were very or somewhat concerned 

that an unauthorized person would see their electronic health 

information if it was shared between providers.

Perceived control over collection, use, and sharing of 

electronic health information

Seventy-five percent of respondents were confident that they 

had a say in the collection, use, and sharing of their electronic 

health information.

Privacy and security concerns as a predictor of 

nondisclosure of medical information

Overall, 12 percent of respondents reported ever withholding 

information from a health care provider out of concern for 

the security and privacy of their electronic health information. 

Respondents had significantly higher odds of withholding medical 

information if they indicated concern about a breach in the 

security of their electronic health information when shared 

between providers or the perception that they had very little say 

in how their electronic health information is used. 

Never smokers were significantly less likely to withhold 

medical information compared to current or former smokers. 

No differences in withholding medical information because of 

security and privacy concerns were found by gender, general 

health condition, age, birthplace, education level, race/ethnicity, 

or marital status. 

About HINTS

hints.cancer.gov

How Can This Inform Your Work?

The use of electronic health information systems has grown rapidly in a short time, and the use of such systems is a critical component 

in improving the quality of cancer care throughout the 21st century. As implementation of these systems continues to expand, 

opportunities exist to enhance their use and acceptance. 

• Findings from HINTS suggest that understanding and addressing 

patients’ concerns about privacy and security will be important 

for successful electronic health record systems adoption and 

to avoid undermining the public’s trust in these systems and/or 

their providers.

• Developing patient-centered applications will be helpful for 

increasing acceptance of electronic health information systems, 

encouraging patient-provider communication, and enabling 

information-sharing among patients, providers, and caregivers.

HINTS was created to monitor changes in the rapidly evolving field of health communication. The 

survey data can be used to understand how adults use different communication channels to obtain 

health information for themselves and their loved ones. It can also help to create more effective health 

communication strategies across populations. The National Cancer Institute (NCI) fielded the first Health Information National

Trends Survey (HINTS) in 2002–2003, surveying 6,369 Americans. Subsequent surveys followed in 2005 (5,586 Americans surveyed), 

2008 (7,674 Americans surveyed), 2011–2012 (3,959 Americans surveyed), 2012–2013 (3,630 Americans surveyed), and

2013 (3,185 Americans surveyed). 

HINTS Briefs provide a snapshot of noteworthy, data-driven research findings. They introduce population-level estimates for 

specific questions in the survey and summarize significant research findings that are a result of analyzing how certain demographic 

characteristics influence specific outcomes. Many Briefs summarize research findings from recent peer-reviewed journal articles using 

HINTS data.

For More Information on Cancer

Call the NCI Cancer Information Service at 1-800-4-CANCER

Visit http://cancer.gov

Order NCI publications at https://pubs.cancer.gov

Visit Facebook.com/cancer.gov and http://www.youtube.com/ncigov

References Used in This HINTS Brief

Agaku, IT, Adisa, AO, Ayo-Yusuf, OA, Connolly, GN. Concern about security and privacy, and 

perceived control over collection and use of health information are related to withholding of 

health information from health care providers. Journal of the American Medical Informatics 

Association. 2014; 21:374-378.

Charles, D, Gabriel, M, Furukawa, MF. Adoption of electronic health record systems among U.S. 

non-federal acute care hospitals 2008–2013. ONC Data Brief, no 16. Washington, DC: Office of 

the National Coordinator for Health Information Technology, May 2014. 

Hsiao, CJ and Hing, E. Use and characteristics of electronic health record systems among officebased physician practices: United States, 2001–2013. NCHS Data Brief, no 143. Hyattsville, MD: 

National Center for Health Statistics, January 2014.

Institute of Medicine. Delivering high-quality cancer care: Charting a new course for a system in 

crisis. Washington, DC: The National Academies Press, 2013. November 2014