National Perceptions regarding the Privacy and Health Information Exchange

Transcription

1 National Perceptions regarding the Privacy and Security of Medical Records and Health Information Exchange June, 2014 Academy Health Vaishali Patel MPH PhD

2 Collaborators Ellen Beckjord, University of Pittsburgh Penelope Hughes, ONC Rick Moser, NCI Bradford Hesse, NCI 1

3 Provider adoption of EHRs has grown substantially Hsiao C-J, Hing E. Use and characteristics of electronic health record systems among office-based physician practices: United States, NCHS data brief, no 143. Hyattsville, MD: National Center for Health Statistics

4 Approximately one-third of physicians are electronically exchanging data 60% Perce ent of Offic ce-based Physicians 40% 20% 36% 33% 10% 0% Any exchange with other Any exchange: Inside the Any exchange: Outside the providers organization organization ONC Analysis of 2012 National Electronic Health Record Survey 3

5 Impact of HIT/HIE trends on individuals perceptions on privacy and security Individuals perceptions portray a complex portrait: Potential to worsen privacy and security Potential to provide greater control over their information and transparency regarding who accesses their information Benefits may outweigh potential privacy risks Evidence is still emerging regarding the downstream effects on patients interactions with providers do potential concerns have a chilling effect? 4

6 Key Aims Perceptions related to Privacy & Security Confidence in the privacy and security of their medical records Concern regarding unauthorized viewing when data exchanged (fax vs. electronic) Downstream effects on patient-provider communication Identify key technology-related, care experience and patient-related factors associated with these perceptions and downstream effects 5

7 HINTS survey National Cancer Institute s (NCI) Health Information National Trends Survey (HINTS) Nationally representative survey of the U.S. noninstitutionalized adult population (18+) October 2011-February of 2012 (n=3,959) Included new items related to privacy and security of medical information. Response rate for the postal survey was 36.7%. There are three more cycles of data collection planned through

8 Outcome Measures Security refers to physical, technological, or administrative safeguards or tools used to protect identifiable health data from unwarranted access or disclosure. How confident are you that safeguards (including the use of technology) are in place to protect your medical records from being seen by people who aren t permitted to see them? Health information privacy is an individual's right to control the acquisition, uses, or disclosures of his or her identifiable health data. How confident are you that you have some say in who is allowed to collect, use, and share your medical information? Withholding of information: Have you ever kept information from your healthcare provider because you were concerned about the privacy or security of your medical record? Sending Medical Information to Providers: If your medical information is sent by fax [electronically] from one healthcare provider to another, how concerned are you that an unauthorized person? 7

9 Independent Variables Technology exposure and use Engagement in online activity: (No Internet use; Use of Internet but not for healthcare activities; Use of Internet for Healthcare activities: Use of PHR, ing gp provider, downloaded health information) Provider use of EHR: As far as you know, do your healthcare providers maintain your medical record in a computerized system? Information efficacy Overall, how confident are you that you could get advice or information about health or medical topics if you needed it? Health care experience Trust in information provided by their healthcare provider Quality of care received in the past 12 months 8

10 Analysis We used SUDAAN version to account for the complex sampling procedure used by HINTS and to produce nationally-representative point estimates. Multivariate analyses Multinomial generalized logit models were used to estimate the relative odds of having concerns about security, privacy, or unauthorized access to faxed versus electronically-transmitted health information. Multivariable logistic regression was used to estimate the odds of withholding information from a healthcare provider due to concerns about privacy and/or security. Predicted probabilities were also computed. 9

11 Results Pre-Decisional: Do not cite/distribute Office of the National Coordinator for Health Information Technology 10

12 Individuals Confidence in Privacy & Security of Medical Records 60 Pro oportion of Individu uals Security Privacy Very confident Somewhat confident Not confident Data source: HINTS 11

13 Concern that an unauthorized person would view information if exchanged via electronic means vs. fax Concerned with electronic Concerned with fax Concerned with electronic only Concerned with fax only 5 7 Not concerned with either method 26 Concerned with both Fax and Electronic 61 Data source: HINTS Percentage of individuals 12

14 Have you ever kept information from your healthcare provider because you were concerned about the privacy or security of your medical record? Withheld 12% 88% Not withheld Data source: HINTS 13

15 Variation in Privacy and Security Perceptions and Downstream effects Pre-Decisional: Do not cite/distribute Office of the National Coordinator for Health Information Technology 14

16 Physicians use of EHR not associated with privacy or security related perceptions/outcomes Adjusted OR (95% CI) Privacy Security Ever Withheld information Adjusted OR (95% CI) Adjusted OR (95% CI) Adjusted OR (95% CI) (Yes vs. No) Adjusted OR (95% CI) HIE Concerned about both fax and electronic vs. Not concerned about either Adjusted OR (95% CI) No EHR (vs. Yes) (0.49, 1.32) (0.56, 1.28) (0.55, 1.81) (0.61, 1.73) (0.55, 1.56) (0.73, 2.17) Adjusted for: Demographic characteristics; technology use and exposure; health status; healthcare experience, information efficacy Data source: HINTS 15

17 Higher levels of information efficacy and positive care experiences associated with greater confidence in the privacy and security Somewhat, A Little, or Not at All Confident in Information Efficacy Very Confident in Information Efficacy Completely confident in Information Efficacy 20% 21% 23% 29% 32% 36% No visits in past 12 months Fair or Poor Quality of Care Good Quality of Care Very good Quality of Care Excellent Quality of Care 19% 24% 15% 16% 17% 21% 23% 24% Predicted Probability of Very Confident in Security of Medical Record Predicted Probability of Very Confident in Privacy of Medical Record 33% 38% 0% 5% 10% 15% 20% 25% 30% 35% 40% Adjusted for: Demographic characteristics; technology use and exposure; health status; healthcare experience, information efficacy Data source: HINTS 16

18 Lower levels of concern about unauthorized viewing among those with greater information efficacy robability Predicted P 100% Completely Confident in Information Efficacy 80% Very Confident fd in Information Efficacy 60% 61% 60% 50% 40% 20% Somewhat, a little, or not at all confident in information efficacy 35% 27% 24% 0% Concerned about both electronic and faxed information Not concerned about either fax nor electronic sending Adjusted for: Demographic characteristics; technology use and exposure; health status; healthcare experience, information efficacy Data source: HINTS 17

19 Individuals with negative care experiences more likely to withhold due to privacy and security concerns Predicted d Probabilit ty 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 11% No visits in the past 12 months 24% 15% 11% 8% Fair or Poor Good Very good Excellent Data source: HINTS Adjusted for: Demographic characteristics; technology use and exposure; health status; healthcare experience, information efficacy 18

20 Key Overall Findings Perceptions are mixed A majority report they are very or somewhat confident in the privacy and security of their medical record. Approximately six in ten individuals express concerns about unauthorized individuals viewing their health information whether by fax or electronic means. Impact on care is tangible Approximately one in eight individuals withhold information from their healthcare provider due to privacy and security concerns related to their medical record. 19

21 Key Factors affecting privacy/security Privacy and dsecurity Health lh Withholding ihh of Medical Records Information Exchange information due to privacy and security concerns Provider EHR use Greater information Confidence Concern efficacy Higher quality care Confidence Less Withholding 20

22 Limitations Not all concepts related to privacy and security measured Response rate Post-stratification t tifi ti weighting techniques used to adjust for non-response Cannot verify self-reported data 21

23 Policy Implications & Conclusions Individuals recognize providers important role in maintaining the privacy and security of medical records Efforts to increase consumers availability and control over health care data may enhance consumer confidence in the privacy and security of their medical record data and electronic HIE. Withholding due privacy and security concerns will require continued surveillance 22