The Impact of Consumer Health Informatics Applications

The Johns Hopkins Evidence Based Practice Center

M. Christopher Gibbons, MD, MPH (PI)Renee F. Wilson, MS, Lipika Samal, MD, Christoph U. Lehmann, MD, Kay Dickersin, MA, PhD, Harold P. Lehmann, MD, PhD, Hanan Aboumatar, MD, Joe Finkelstein, MD, PhD,

Erica Shelton, MD, Ritu Sharma, BS, Eric B. Bass, MD, MPH

October, 2009

NoteThese 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.

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.

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.

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.

Key Questions

1. What evidence exists that CHI applications impact:a) Health care process outcomes (e.g., receiving appropriate

treatment) among users?b) Intermediate health outcomes (e.g. self management,

health knowledge, and health behaviors) among users?c) Relationship-centered outcomes (e.g. shared decision

making or clinician-patient communication) among users?d) Clinical outcomes (including quality of life) among users?e) Economic outcomes (e.g., cost and access to care) among

users?

Key Questions

1. What are the barriers that clinicians, developers, consumers and their families or caregivers encounter that limit utilization or implementation of CHI applications?

2. What knowledge or evidence exists to support estimates of cost, benefit, and net value with regard to CHI applications?

3. 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?

Methodology

Conceptual Model1. What perspective?

1. Outcomes/effectiveness2. Users3. Informatics tools

1. Functional2. Architecture/Hardware3. Message Conten

2. Goals?

Methodology

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.

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

CHI Impact on Process outcomes (KQ 1a)

RESULTS

Significant (+) impact of CHI in at least one outcome

– 4 of 5 asthma studies

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

Relationship centered outcomes (KQ1c)

RESULTS

Significant (+) impact of CHI in at least one outcome

– 5 of 8 studies

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

Economic Outcomes (KQ1e)

RESULTS

Insufficient evidence to determine economic impact of CHI

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.

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)

The cost benefit of CHI (KQ3)

RESULTS

Insufficient evidence to determine the cost benefit of CHI

Knowledge/evidence Deficits regarding CHI Value (KQ4)

RESULTSPatient factors

The impact of patient preferences, knowledge, attitudes, beliefs, on CHI utilization and outcomesThe efficacy of Using Web 2.0/Web 3.0, ubiquitous computing and social networking environments for CHI applicationsEffect of sociocultural and community factors on access, usability, desirability and benefit of CHI applicationsTrust, security, confidentiality of CHI data CHI and at risk populations (children, seniors, disabled, minorities)

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

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.

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

CHI Research Needs and Opportunities

Standardized interdisciplinary CHI nomenclature

A CHI Design & evaluation registry

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