The Impact of Consumer Health Informatics Applications

1. The Impact of Consumer Health Informatics Applications The Johns Hopkins Evidence Based Practice Center M. Christopher Gibbons, MD, MPH (PI) Renee F. Wilson, MS, LipikaSamal, MD, Christoph U. Lehmann, MD, Kay Dickersin, MA, PhD, Harold P. Lehmann, MD, PhD, HananAboumatar, MD, Joe Finkelstein, MD, PhD, Erica Shelton, MD, Ritu Sharma, BS, Eric B. Bass, MD, MPH October, 2009

2. Note These slides are based on research conducted by the Johns Hopkins EPC under contract to the Agency for Healthcare Research and Quality (AHRQ), Rockville, MD (Contract No. 290-2007-10061-I). The findings and conclusions in this document are those of the authors who are responsible for its contents; the findings and conclusions do not represent the views of AHRQ. Therefore, no statement in this document should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services Financial disclosure: None of the authors have a financial interest in any of the products discussed in these slides. For more information about the Evidence-base Practice Centers Program and to view the final report from which these slides are based, please visit http://www.ahrq.gov/clinic/epcix.htm.

3. Background • HIT may enable future transformations in health care delivery, quality, outcomes and costs. • There is growing interest in electronic tools that are owned and operated primarily by patients and healthcare consumers.

4. Background Consumer health informatics (CHI) applications are defined as any electronic tool, technology or electronic application that is designed to interact directly with consumers, with or without the presence of a healthcare professional, that provides or uses individualized (personal) information and provides the consumer with individualized assistance, to help the patient better manage their health or healthcare.

5. Background The objectives of this report were to review the literature on the evidence of the health impact of currently developed CHI applications, to identify the gaps in the CHI literature, and to make recommendations for future CHI research.

6. Key Questions • What evidence exists that CHI applications impact: • Health care process outcomes (e.g., receiving appropriate treatment) among users? • Intermediate health outcomes (e.g. self management, health knowledge, and health behaviors) among users? • Relationship-centered outcomes (e.g. shared decision making or clinician-patient communication) among users? • Clinical outcomes (including quality of life) among users? • Economic outcomes (e.g., cost and access to care) among users?

7. Key Questions • What are the barriers that clinicians, developers, consumers and their families or caregivers encounter that limit utilization or implementation of CHI applications? • What knowledge or evidence exists to support estimates of cost, benefit, and net value with regard to CHI applications? • What critical information regarding the impact of CHI applications is needed to give consumers, their families, clinicians, and developers a clear understanding of the value proposition particular to them?

8. Methodology Conceptual Model • What perspective? • Outcomes/effectiveness • Users • Informatics tools • Functional • Architecture/Hardware • Message Conten • Goals?

9. Methodology

10. Methodology • Search strategy • RCT’s Only (Key Question #1) • All study designs (Key Questions #2, #3, #4) • Databases • MEDLINE®, EMBASE®, The Cochrane Library, Scopus, and CINAHL • Published reviews, Grey literature • Query of technical experts , advisors, and project investigators  • Exclusion Criteria • No health informatics application, Application does not apply to the consumer, General health information application (general Web site) and is not tailored to individual consumers, “Point of care” device (defined as requiring a clinician to use or obtain and is part of the regular provision of care), or No original data provided.

11. Methodology • Quality assessment • Jadad Criteria • GRADE Working Group Criteria • Double data review and quality assessment • Iterative feedback and review by technical expert panel (TEP) & External Advisors

12. CHI Impact on Process outcomes (KQ 1a) RESULTS • Significant (+) impact of CHI in at least one outcome • 4 of 5 asthma studies

13. Results for Intermediate outcomes (KQ 1b) • Significant (+) impact of CHI in at least one outcome • 100% of 3 breast cancer studies, • 89% of 32 diet/exercise/physical activity studies • 100% of 7 alcohol abuse studies, • 58% of 19 smoking cessation studies, • 64% of 11 obesity studies, • 86% of 7 Diabetes studies, • 88% of 8 mental health studies, • 75% of 4 asthma/COPD studies • 14 single studies on other conditions

14. Relationship centered outcomes (KQ1c) RESULTS • Significant (+) impact of CHI in at least one outcome • 5 of 8 studies

15. Clinical outcomes (KQ1d) RESULTS • Significant (+) impact of CHI in at least one outcome • Clinical outcomes • 1 of 3 breast cancer studies • 2 of 5 diet/exercise/physical activity studies • 7 of 7 mental health studies • 1 of 3 Diabetes studies • 11 miscellaneous single studies • No evidence of consumer harm attributable to CHI

16. Economic Outcomes (KQ1e) RESULTS • Insufficient evidence to determine economic impact of CHI

17. CHI utilization Barriers (KQ2) RESULTS • 31 studies addressed the barriers to CHI applications • Cancer, HIV/AIDS (and sexually transmitted disease), mental health, physical activity/diet/obesity, smoking cessation, prostate cancer, and hypertension. • Systems level barriers • Internet access at home or in the community, Computer hardware requirements, Computer device shape/design/configuration, incompatibility with current healthcare as a barrier.

18. CHI utilization Barriers (KQ2) RESULTS • Individual level barriers • Clinic staff who feared increased workloads, lack of built-in social support, forgotten passwords, automated data entry, inability to allow for back entry of old data, lack of adequate user customization, substantial financial investment. • Application usability (19 0f 19 studies), Patient knowledge, literacy, and skills (11 of 12 studies), Application too time-consuming (5 of 6 studies), too many participant emails (1 of 1 study), Utilization fees (1 of 1 study), Privacy concerns, doubt regarding patient control of information or lack of healthcare system trust (4 of 5 studies), cultural barriers (1 of 2 studies), Consumers expectations of application acceptability, usefulness, credibility (8 of 8 studies), Cost (1 of 1 study), Physical or cognitive impairment (1 of 1 study), Anxiety over the use of computers, complaints about lack of personal contact with clinicians and the belief that IT would not be an improvement to current care (2 of 2 studies)

19. The cost benefit of CHI (KQ3) RESULTS • Insufficient evidence to determine the cost benefit of CHI

20. Knowledge/evidence Deficits regarding CHI Value (KQ4) RESULTS • Patient factors • The impact of patient preferences, knowledge, attitudes, beliefs, on CHI utilization and outcomes • The efficacy of Using Web 2.0/Web 3.0, ubiquitous computing and social networking environments for CHI applications • Effect of sociocultural and community factors on access, usability, desirability and benefit of CHI applications • Trust, security, confidentiality of CHI data • CHI and at risk populations (children, seniors, disabled, minorities)

21. Knowledge/evidence Deficits regarding CHI Value (KQ4) RESULTS • CHI application utilization factors • The effect of differential access to broadband internet access, health literacy, or technology literacy on CHI mediated health outcomes • Technology-related issues • The relative importance of hardware vs. software design on CHI efficacy • The impact of Culturally Informed (hardware) Design on outcomes • Health-related questions • The role of CHI applications in addressing acute health problems • The role of CHI applications in primary, secondary and tertiary prevention • The impact of CHI applications on social factors including social isolation and social support and broader social determinants of health

22. Discussion • Current literature is broad (studies on many topic areas) but at times thin (limited number of studies in each topic area) • Emerging themes • CHI applications can significantly impact health outcomes • CHI applications may also be effective adjuvants to traditional healthcare • Effective CHI applications include 1) individual tailoring, 2) personalization and 3) behavioral feedback.

23. Knowledge Gaps Regarding CHI Applications • The role of CHI applications targeting children, adolescents, the elderly and caregivers. • Consumer knowledge, attitudes, beliefs, perceptions and practices regarding technology utilization, particularly among priority populations • The effect of CHI applications on health outcomes among racial and ethnic minority populations, low literacy populations and the potential effect of these applications on healthcare disparities. • The impact of CHI content design (software) vs. platform design (hardware) on consumer utilization and outcomes • The role of Web 2.0, social networking and use of other platforms (e.g.“On Demand”, television and gaming platforms) in CHI applications

24. CHI Research Needs and Opportunities • Standardized interdisciplinary CHI nomenclature • A CHI Design & evaluation registry

25. Project Summary • Consumer Health Informatics offer the promise of enhancing patient centeredness, improving access to healthcare interventions and therapies, lowering healthcare costs, improving health outcomes and reducing health disparities. • The impact of CHI applications has not been previously reviewed • Despite study heterogeneity and some data paucity, this review found evidence that CHI applications can improve certain adult clinical and intermediate health outcomes (mental health and smoking cessation) • Effective interventions often employ tailored content, personalized messages and appropriate, ongoing behavioral feedback • The role of CHI applications among children, priority populations, on healthcare processes or economics has not been adequately evaluated • Many personal and systems level utilization barriers exist • Knowledge gaps include the health impact of social networking technologies, CHI impact on Disparities, the role of CHI in acute disease management and primary, secondary or tertiary disease prevention • Next steps should include the development of a standardized nomenclature and CHI registry to facilitate research and reporting