Sociotechnical challenges to developing technologies for patient access to health information exchange data

Background

Providing patients with access to their medical data is widely expected to help educate and empower them to manage their own health. Health information exchange (HIE) infrastructures could potentially help patients access records across multiple healthcare providers. We studied three HIE organizations as they developed portals to give consumers access to HIE data previously exchanged only among healthcare organizations.

Objective

To follow the development of new consumer portal technologies, and to identify barriers and facilitators to patient access to HIE data.

Methods

Semistructured interviews of 15 key informants over a 2-year period spanning the development and early implementation of three new projects, coded according to a sociotechnical framework.

Results

As the organizations tried to develop functionality that fully served the needs of both providers and patients, plans were altered by technical barriers (primarily related to data standardization) and cultural and legal issues surrounding data access. Organizational changes also played an important role in altering project plans. In all three cases, patient access to data was significantly scaled back from initial plans.

Conclusions

This prospective study revealed how sociotechnical factors previously identified as important in health information technology success and failure helped to shape the evolution of three novel consumer informatics projects. Barriers to providing patients with seamless access to their HIE data were multifactorial. Remedies will have to address technical, organizational, cultural, and other factors.     

From Streets to Homes

Abstract

This paper describes essential elements of the Consumer Preference Supported Housing (CPSH) Model of homelessness prevention in use at Pathways to Housing, Inc. in New York City. This intervention prevents homelessness by engaging and housing homeless substance abusers with psychiatric disabilities whom other programs have rejected as “treatment resistant” or “not housing ready.” The CPSH model is built on the belief that housing is a basic right for all people. As opposed to the housing continuum model, housing is based on consumer choice and is not connected to compliance or treatment. Housing is provided immediately, and there are separate criteria for housing and treatment needs. Support services are aimed at integration of mental health and substance abuse services.

In a randomized controlled study, individuals who are currently homeless and have psychiatric disabilities and/or substance abuse problems are randomly assigned to either the CSPH intervention or an intervention using the linear continuum model. Participants will be followed for a period of one year and the study will provide feedback regarding the effectiveness of the CSPH model.     

Information needs of people with low back pain for an online resource: a qualitative study of consumer views

Abstract

Purpose: To identify the information needs of people with low back pain (LBP) in Australia, and the preferred methods to present this information online, as a basis for development of a patient-centred website. Available online LBP resources are limited in quality and content and it is not clear if they are meeting the needs of sufferers. Method: Focus groups and semi-structured telephone interviews, involving 28 people with LBP. Results: Seven categories of information were identified: reasons for LBP, treatment and management options, self-help information, psychological and social dimensions, lay stories, quality assurance of information and roles of different healthcare professionals and locally available services. Identified preferences for online presentation included: multimodality, emphasis on visual media, readability and interactivity. Participants had been unable to obtain desired LBP information using existing resources. Conclusions: This study provides important guidance for development of a patient-centred website grounded in the expressed needs and preferences of people with LBP. Understanding the breadth of patients’ questions and concerns is essential for provision of patient-centred information and interventions. Incorporating these with the current evidence base would provide an accessible and relevant LBP patient education referral point, which is currently lacking.

• Implications for Rehabilitation

• Use of the internet to obtain health information is increasing, although there is little evidence that existing low back pain websites are meeting the expressed needs of health consumers.

• Our research suggests that people with low back pain have difficulty finding relevant and trustworthy information about the condition on the internet.

• Taking patient information needs and presentation preferences into account when designing online information material will provide people with low back pain an accessible and relevant educational resource that is currently lacking.

     

Biomonitoring equivalents for di-isononyl phthalate (DINP)

Biomonitoring Equivalents (BEs) are defined as the concentration or range of concentrations of a chemical or its metabolite in a biological medium (blood, urine, or other medium) that is consistent with an existing health-based exposure guideline such as a reference dose (RfD) or tolerable daily intake (TDI). BE values can be used as a screening tool for the evaluation of population-based biomonitoring data in the context of existing risk assessments. This study reviews available health based risk assessments and exposure guidance values for di-isononyl phthalate (DINP) from Health Canada, the United States Consumer Product Safety Commission (US CPSC), and the European Food Safety Authority (EFSA). Controlled dosing data reporting the urinary excretion fractions of major DINP metabolites following administration of labeled DINP are reviewed, and BE values corresponding to the available exposure guidance values are derived assuming chronic, steady-state intake and excretion at those exposure values. The BE values range from 1500 to 3600μg/L (1900-4600μg/g creatinine) based on the sum of three oxidative metabolites. Sources of uncertainty relating to both the basis for the BE values and their use in evaluation of biomonitoring data, including the transience of the biomarkers relative to exposure frequency, are discussed. The BE values derived here can be used as screening tools for evaluation of population biomonitoring data for DINP in the context of existing risk assessments and can assist in prioritization of the potential need for additional risk assessment efforts for DINP relative to other chemicals.     

A Neuroscientist–Consumer Alliance to Transform Mental Health Care

The field of mental health has long suffered from a lack of convergence of disciplines that deal with the mind, the brain, and behavior. This mind–brain dualism has been particularly detrimental for consumers and their families who daily face stigma and discrimination. The understanding of the brain and its dysfunctions has benefited from the study of the human genome and, in particular, of the mutations and variations in its code. This analysis permits a better understanding of the biological basis of mental disease and will soon inform a generation of new diagnostic tools and individualized pharmacological therapies. A biological perspective on mental illness will be complemented by the analysis of the social factors influencing people's behavior and their impact on brain biology and gene function. Neurobiology has progressed to a level for which the knowledge that is generated, even if still colored with uncertainty, could represent a catalyst for the creation of an alliance between neuroscientists and consumers. This partnership has the potential to benefit both parties but will require some concrete steps that might be outside of the usual courses of action for both consumers and scientists. It is by building collaborations based on personal contact and information sharing that a transformation of the mental health care system can occur.Ronald W. Manderscheid, PhD, Chief of Survey and Analysis Branch, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, 1 Choke Cherry Road, Rockville, MD 20853, USA.     

Association of eHealth Literacy With Colorectal Cancer Knowledge and Screening Practice Among Internet Users in Japan

Background

In rapidly developing Internet-user societies, eHealth literacy has become important in promoting wellness. Although previous studies have observed that poor health literacy is associated with less knowledge and screening practice of colorectal cancer (CRC), little is known about whether eHealth literacy is associated with these variables.

Objective

The present study examined associations between eHealth literacy, knowledge of CRC, and CRC screening practices.

Methods

Data were analyzed for 2970 Japanese adults (men, 49.9%; mean age ± SD, 39.7 ± 10.9 years) who responded to an Internet-based cross-sectional survey. Knowledge of the definition of CRC, its risk factors and screening practice, previous experience of CRC screening, score on the Japanese version of the eHEALS (J-eHEALS), sociodemographic attributes (sex, age, marital status, educational attainment, and household income level), and frequency of Internet usage were obtained. Sociodemographic attributes and frequency of Internet usage were used as control variables in the multiple regression and logistic regression models.

Results

eHealth literacy was positively associated with CRC knowledge (β = .116, < .001), when the covariables of both eHealth literacy and CRC knowledge were used in the multiple regression model. Moreover, after controlling for sociodemographic factors, which were significantly associated with eHealth literacy and CRC screening practice, an increase of 1 point in the eHEALS score signified that participants were 1.03 times (95% CI = 1.01–1.05) more likely to undergo CRC screening.

Conclusions

Internet users with high eHealth literacy are more likely to have knowledge and previous screening practice related to CRC compared to those with low eHealth literacy.     

Preliminary results for the PAR-PRO: a measure of home and community participation

OBJECTIVE: To develop a measure of home and community participation related to the World Health Organization's International Classification of Functioning, Disability and Health. DESIGN: Cross-sectional analysis of survey data. SETTING: Nine medical inpatient rehabilitation facilities from 6 states. PARTICIPANTS: A total of 594 patients of mixed impairment type admitted for inpatient rehabilitation in 2002. Mean age was 74.0 years and 61.4% were women. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Reliability and validity of the participation instrument. RESULTS: A 20-item instrument of home and community participation was developed (PAR-PRO). The instrument showed good internal consistency and good Rasch person and item fit statistics. Four subfactors were identified beyond the unidimensional construct of participation including domestic management, socialization, physical vigor, and generative activities. The PAR-PRO total participation score correlated inversely with age (r=-.31, P<.001) but did not differ by sex. CONCLUSIONS: The 20-item PAR-PRO instrument of home and community participation displayed good psychometric characteristics. The instrument shows promise as a broad measure of home and community involvement for persons with disabilities. Further work is needed to support its application for people without disability.     

Safety assessment of personal care products/cosmetics and their ingredients

We attempt to review the safety assessment of personal care products (PCP) and ingredients that are representative and pose complex safety issues. PCP are generally applied to human skin and mainly produce local exposure, although skin penetration or use in the oral cavity, on the face, lips, eyes and mucosa may also produce human systemic exposure. In the EU, US and Japan, the safety of PCP is regulated under cosmetic and/or drug regulations. Oxidative hair dyes contain arylamines, the most chemically reactive ingredients of PCP. Although arylamines have an allergic potential, taking into account the high number of consumers exposed, the incidence and prevalence of hair dye allergy appears to be low and stable. A recent (2001) epidemiology study suggested an association of oxidative hair dye use and increased bladder cancer risk in consumers, although this was not confirmed by subsequent or previous epidemiologic investigations. The results of genetic toxicity, carcinogenicity and reproductive toxicity studies suggest that modern hair dyes and their ingredients pose no genotoxic, carcinogenic or reproductive risk. Recent reports suggest that arylamines contained in oxidative hair dyes are N-acetylated in human or mammalian skin resulting in systemic exposure to traces of detoxified, i.e. non-genotoxic, metabolites, whereas human hepatocytes were unable to transform hair dye arylamines to potentially carcinogenic metabolites. An expert panel of the International Agency on Research of Cancer (IARC) concluded that there is no evidence for a causal association of hair dye exposure with an elevated cancer risk in consumers. Ultraviolet filters have important benefits by protecting the consumer against adverse effects of UV radiation; these substances undergo a stringent safety evaluation under current international regulations prior to their marketing. Concerns were also raised about the safety of solid nanoparticles in PCP, mainly TiO₂ and ZnO in sunscreens. However, current evidence suggests that these particles are non-toxic, do not penetrate into or through normal or compromised human skin and, therefore, pose no risk to human health. The increasing use of natural plant ingredients in personal care products raised new safety issues that require novel approaches to their safety evaluation similar to those of plant-derived food ingredients. For example, the Threshold of Toxicological Concern (TTC) is a promising tool to assess the safety of substances present at trace levels as well as minor ingredients of plant-derived substances. The potential human systemic exposure to PCP ingredients is increasingly estimated on the basis of in vitro skin penetration data. However, new evidence suggests that the in vitro test may overestimate human systemic exposure to PCP ingredients due to the absence of metabolism in cadaver skin or misclassification of skin residues that, in vivo, remain in the stratum corneum or hair follicle openings, i.e. outside the living skin. Overall, today's safety assessment of PCP and their ingredients is not only based on science, but also on their respective regulatory status as well as other issues, such as the ethics of animal testing. Nevertheless, the record shows that today's PCP are safe and offer multiple benefits to quality of life and health of the consumer. In the interest of all stakeholders, consumers, regulatory bodies and producers, there is an urgent need for an international harmonization on the status and safety requirements of these products and their ingredients.     

Can people find patient decision aids on the Internet?

Objective

To determine if people could find patient decision aids (PtDAs) on the Internet using the most popular general search engines.

Methods

We chose five medical conditions for which English language PtDAs were available from at least three different developers. The search engines used were: Google (www.google.com), Yahoo! (www.yahoo.com), and MSN (www.msn.com). For each condition and search engine we ran six searches using a combination of search terms. We coded all non-sponsored Web pages that were linked from the first page of the search results.

Results

Most first page results linked to informational Web pages about the condition, only 16% linked to PtDAs. PtDAs were more readily found for the breast cancer surgery decision (our searches found seven of the nine developers). The searches using Yahoo and Google search engines were more likely to find PtDAs. The following combination of search terms: condition, treatment, decision (e.g. breast cancer surgery decision) was most successful across all search engines (29%).

Conclusion

While some terms and search engines were more successful, few resulted in direct links to PtDAs.

Practice implications

Finding PtDAs would be improved with use of standardized labelling, providing patients with specific Web site addresses or access to an independent PtDA clearinghouse.