Consumers Perception of Shared Individual Digital Medical Records

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

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

Digital Medical Records Technology Problem: providers not connected; difficult to share or transfer information;

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

 • 1998: Formed by leading health care organizations in Santa Barbara • Provides

• 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

My Research New area; issue at forefront of political and medical discussions Uses several

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

– Consumers’ perception of new technology on 5 attributes influences adoption/rejection Theory Relative advantage,

– Consumers’ perception of new technology on 5 attributes influences adoption/rejection Theory 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

Public Opinion & Legislation 1999 Poll: 80% feel they are no longer able to

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

Methodology Literature review Interviews with stakeholders Pilot focus group Focus groups Word, theme and

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

Stakeholder Interviews Representatives identified by SBCCDE Executive Director – Non-profit stakeholders: SBPHD, SBRHA, community

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

Focus Groups Individuals’ reactions to implementation of digital medical records Group types determined by

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

Focus Group Results All – – – Thought DMRs would be accessible, ideal in

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

Semantic Network Analysis First, looked at word frequencies Words occurring most frequently together form

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

Individual Characteristics Gender (F) (-) Age (-) Healthy (-) No Chronic Illness Expenses Responsibility

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 (+) Innovation Attributes Relative Advantage (+) Compatibility (+) Complexity (-) Trialability (+) Observability (+) Model Technology Evaluation Adoption Reinvention

Survey Pilot survey Standard scales: Bunz (2001) web fluency, Buss (2001) need for privacy,

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

Survey Results: Adoption & Reinvention Bivariate correlations, multivariate regressions analyzed for directional predictions Multivariate

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

Modified Model Individual Characteristics • Expenses Responsibility (+) Technology Use Privacy and Rights §Organizational

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

Significant Variables

Significant Variables

Research Implications Annual expenses most significant individual characteristic – Populations with different financial responsibilities

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

Research Implications High concern for organizational privacy – Inform consumers how to protect information;

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

Future Research Role of self efficacy as a moderating variable (tested; no effect) How

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?

Acknowledgements Participants Communication Dept. Faculty and Staff URCA (Undergraduate Research and Creative Activities program)

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