Consumers' Perception of Shared Individual Digital Medical Records: Accessibility, Privacy, and New Technology

1. Consumers' Perception of Shared Individual Digital Medical Records: Accessibility, Privacy, and New Technology Kier Wallis & Ronald E. Rice Dept. of Communication UC Santa Barbara

2. Digital Medical Records Technology • Problem: providers not connected; difficult to share or transfer information; records incomplete • Solution: Digital Medical Record (DMR) • Clinical and administrative data from individual patients (e.g., lab results, x-rays, appointments, doctor’s notes), stored in electronic database • Improves healthcare efficiency, effectiveness

3. 1998: Formed by leading health care organizations in Santa Barbara • Provides technical, organizational, financial, and legal infrastructure for sharing clinical data among regional physicians, hospitals, consumers, and health care related organizations • SBCCDE hosts clinical data • repository on behalf of • participating organizations • Patients can view lab results, • users who have accessed • their records

4. My Research • New area; issue at forefront of political and medical discussions • Uses several research methods and different levels of analysis • Learn about, work, and meet with organizations involved in SBCCDE • Influence future efforts to inform and educate consumers about DMRs

5. Theory • Diffusion of Innovations (Rogers, 1983) • Consumers’ perception of new technology on 5 attributes influences adoption/rejection • Relative advantage, compatibility, complexity, trialability, observability • Reinvention • Privacy • Ability to control collection and use of personal information (Westin, 1967) • Organization-consumer struggle affected by several privacy factors, including (Smith et al., 1996): • Unauthorized Secondary Use, Improper Access, Collection, Errors

6. Public Opinion & Legislation • 1999 Poll: 80% feel they are no longer able to control how companies collect and subsequently use consumers’ information (IBM) • HIPAA: Health Insurance Portability and Accountability Act (1996) • Intended to safeguard security and confidentiality of patient health information esp. for electronic transfer

7. Methodology • Literature review • Interviews with stakeholders • Pilot focus group • Focus groups • Word, theme and semantic network analysis • Feedback from SBCCDE Executive Director • Pilot survey • Survey

8. Stakeholder Interviews • Representatives identified by SBCCDE Executive Director • Non-profit stakeholders: SBPHD, SBRHA, community • For-profit stakeholders: Cottage Hospital, SFMC, clinicians • Common • Goal to improve healthcare, coordinate medical programs • Concern for data accuracy, system’s costs • Non-Profit • Not enough community involvement • Anxiety over security, privacy • For-Profit • Contributed funding, data, people • Interoperability

9. Focus Groups • Individuals’ reactions to implementation of digital medical records • Group types determined by literature and interviews • 3 healthy undergraduate groups • 1 ‘chronically ill’ undergraduate group • 1 graduate student group • 1 employee group

10. Focus Group Results • All • Thought DMRs would be accessible, ideal in emergencies • Concerned about medical rights, privacy, security • Almost all would access record • Undergraduates • Supported implementation • Would sign waiver releasing their medical records • No significant difference with ‘chronic illness’ group • Employees, graduates • Concerned about health insurance, employers • More hesitant to release medical records

11. Semantic Network Analysis • First, looked at word frequencies • Words occurring most frequently together form clusters according to strength of relationship • Which words clustered together? • Individuals: “I don’t know information;” medical records’ content; privacy rights • Benefits: Access, transfer, better file, “easy access” for doctors

12. Individual Characteristics Gender (F) (-) Age (-) Healthy (-) No Chronic Illness Expenses Responsibility (+) Insurance Responsibility (+) College Year (+) Self Efficacy (+) Technology Use Internet Use (+) Web Expertise (+) Computer Use Location Web Fluency (+) Privacy and Rights Need for Privacy (-) General Privacy Concerns (-) Organizational Privacy Concerns (-) Concerns about Computer Privacy (-) Accurate Perception of Patient’s Legal Rights (+) Model Technology Evaluation Adoption Reinvention Innovation Attributes Relative Advantage (+) Compatibility (+) Complexity (-) Trialability (+) Observability (+)

13. Survey • Pilot survey • Standard scales: Bunz (2001) web fluency, Buss (2001) need for privacy, Smith et al. (1996) organizational privacy, Jerusalem & Schwarzer (1992) self efficacy • New scales: innovation attributes, perception of legal rights, adoption, reinvention • Descriptive, bivariate, multivariate analyses • 413 respondents, 76.8% female, 19.5 yrs old, 80% healthy, 79% not responsible for annual expenses

14. Survey Results: Adoption & Reinvention • Bivariate correlations, multivariate regressions analyzed for directional predictions • Multivariate regression (only significant influences): • Related to adoption • Observability • Compatibility • Trialability • Complexity • Explanation • Organizational Privacy • Collection • Annual Expenses • Related to reinvention • Observability • Relative Advantage • Complexity • Explanation • Organizational Privacy • Unauthorized access • Annual Expenses

15. Modified Model • Individual Characteristics • Expenses Responsibility (+) • Technology Use • Privacy and Rights • Organizational Privacy Concerns (-) • Collection • Unauthorized Access • Technology Evaluation • Adoption • Reinvention • Innovation Attributes • Relative Advantage (+) • Compatibility (+) • Complexity (-) • Errors (Reinvention) • Explaining • Trialability (+) • Observability (+)

16. Significant Variables

17. Research Implications • Annual expenses most significant individual characteristic • Populations with different financial responsibilities will respond differently • Technology/Web experience influences adoption/rejection • Disparities in computer skills must be considered • Respondents had an inaccurate perception of medical rights • If informed, population more likely to adopt technology

18. Research Implications • High concern for organizational privacy • Inform consumers how to protect information; encourage orgs. to publish policies • Respondents interested in interacting with medical record • Create opportunities for patient involvement to foster adoption • Respondents saw benefits in comparison to paper records; better treatment • Emphasize in consumer campaigns

19. Future Research • Role of self efficacy as a moderating variable (tested; no effect) • How do clinicians evaluate the technology? Does it change their relationship with patients? • How will patients use the technology?

20. Acknowledgements • Participants • Communication Dept. Faculty and Staff • URCA (Undergraduate Research and Creative Activities program) • Mike Skinner and SBCCDE • Fellow Students • For more information, please visit: http://www.comm.ucsb.edu/faculty/rrice/sbccde.pdf