Holly A. Massett

Understanding Consumers' Health Information Preferences: Development and Validation of a Brief Screening Instrument

The impact of health communication is generally enhanced when it is targeted or tailored to the needs of a specific population or individual. In a segmentation analysis of the U.S adult population—using data from 2,636 respondents to a mail panel survey—we identified four segments of the adult population that vary significantly with regard to health information preferences based on their degree of engagement in health enhancement, and their degree of independence in health decision making. We also created a brief (10 item), easy-to-administer screening instrument that indicates into which segment people fall. The purpose of this article is to describe the segments, and the screening instrument, and to present initial tests of its validity. We believe this instrument offers a practical tool for differentiating motivationally coherent subgroups of the adult population with regard to their health information preferences, and therefore may have practical value in improving health communication and health services provision efforts. Additional research is needed to further validate the tool and test its utility in guiding the creation of targeted health messages and programs.

Usability and accessibility in consumer health informatics current trends and future challenges.

It is a truism that, for innovative eHealth systems to have true value and impact, they must first and foremost be usable and accessible by clinicians, consumers, and other stakeholders. In this paper, current trends and future challenges in the usability and accessibility of consumer health informatics will be described. Consumer expectations of their healthcare providers and healthcare records in this new era of consumer-directed care will be explored, and innovative visualizations, assistive technologies, and other ways that healthcare information is currently being provided and/or shared will be described. Challenges for ensuring the usability of current and future systems will also be discussed. An innovative model for conducting systematic, timely, user-centered research on consumer-facing websites at the National Cancer Institute (NCI) and the ongoing efforts at the National Institute of Standards and Technology (NIST) to promote health information technology (HIT) usability standards and evaluation criteria will also be presented.

Public perceptions about prematurity: a national survey☆

BACKGROUND More than 460,000 preterm babies are born annually in the United States, with rates varying depending on the mothers race/ethnicity. Preliminary evidence suggests that the general public may have a lack of knowledge and misconceptions about preterm birth. METHODS A national telephone survey of U.S. adults, over-sampling for black and Hispanic women, was conducted in 2002 to assess peoples knowledge, attitudes, and beliefs related to preterm birth (N=1967). Analyses included racial/ethnic differences among womens responses and comparisons to mens responses. RESULTS Prematurity was named by <1% of women as the most important issue facing pregnant women and infants. Overall, 34% of women and 31% of men felt that prematurity is a common problem in the United States, and 38% of women and 25% of men believed prematurity to be a serious problem in the United States. More black and Hispanic women considered prematurity to be common and serious. A majority of women (65%) and men (59%) attributed preterm births to risky prenatal maternal behaviors. CONCLUSIONS Although nearly one in eight babies is born prematurely, most U.S. adults do not consider prematurity to be a serious public health problem. While the etiology can be identified in only half of spontaneous preterm births, the public largely blames the mothers prenatal behavior. Misperceptions are prevalent and may impede future research and prevention efforts if not corrected.

Using the Internet to Search for Cancer Clinical Trials: A Comparative Audit of Clinical Trial Search Tools

Advancing the clinical trial research process to improve cancer treatment necessitates helping people with cancer identify and enroll in studies, and researchers are using the power of the Internet to facilitate this process. This study used a content analysis of online cancer clinical trial search tools to understand what people with cancer might encounter. The content analysis revealed that clinical trial search tools were easy to identify using a popular search engine, but their functionality and content varied greatly. Most required that users be fairly knowledgeable about their medical condition and sophisticated in their web navigation skills. The ability to search by a specific health condition or type of cancer was the most common search strategy. The more complex tools required that users input detailed information about their personal medical history and have knowledge of specific clinical trial terminology. Search tools, however, only occasionally advised users to consult their doctors regarding clinical trial decision-making. This, along with the complexity of the tools suggests that online search tools may not adequately facilitate the clinical trial recruitment process. Findings from this analysis can be used as a framework from which to systematically examine actual consumer experience with online clinical trial search tools.

A Descriptive Analysis of 10 Years of Research Published in the Journal of Health Communication

This article describes the contents of the articles from the first decade of The Journal of Health Communication (JOHC). Three hundred and twenty-one published articles were reviewed and coded to determine the characteristics of the researchers, the types of research presented, the common health topics covered, and the research designs used. The results led to the following profile of a typical article. Its primary author is a U.S. academic. It probably focuses on smoking, HIV/AIDS, or cancer. It is an empirical research study, more likely to use quantitative, specifically survey methods, rather than qualitative methods. It probably is not driven by theory. It is much more likely to examine mass media communication than interpersonal communication. Its purpose is just as likely to be audience analysis as message design, as evaluation of a planned communication intervention. If its purpose is to evaluate a planned communication intervention however, that intervention is almost certainly a successful one.

Validating a Health Consumer Segmentation Model: Behavioral and Attitudinal Differences in Disease Prevention-Related Practices

While researchers typically have segmented audiences by demographic or behavioral characteristics, psychobehavioral segmentation schemes may be more useful for developing targeted health information and programs. Previous research described a four segment psychobehavioral segmentation scheme—and a 10-item screening instrument used to identify the segments—based predominantly on peoples orientation to their health (active vs. passive) and their degree of independence in health care decision making (independent vs. dependent). This study builds on this prior research by assessing the screening instruments validity with an independent dataset and exploring whether people with distinct psychobehavioral orientations have different disease prevention attitudes and preferences for receiving information in the primary care setting. Data come from 1,650 respondents to a national mail panel survey. Using the screening instrument, respondents were segmented into four groups—independent actives, doctor-dependent actives, independent passives,and doctor-dependent passives. Consistent with the earlier research, there were clear differences in health-related attitudes and behaviors among the four segments. Members of three segments appear quite receptive to receiving disease prevention information and assistance from professionals in the primary care setting. Our findings provide further indication that the screening instrument and corresponding segmentation strategy may offer a simple, effective tool for targeting and tailoring information and other health programming to the unique characteristics of distinct audience segments.

Challenges Facing Early Phase Trials Sponsored by the National Cancer Institute: An Analysis of Corrective Action Plans to Improve Accrual

Accruing patients in a timely manner represents a significant challenge to early phase cancer clinical trials. The NCI Cancer Therapy Evaluation Program analyzed 19 months of corrective action plans (CAP) received for slow-accruing phase I and II trials to identify slow accrual reasons, evaluate whether proposed corrective actions matched these reasons, and assess the CAP impact on trial accrual, duration, and likelihood of meeting primary scientific objectives. Of the 135 CAPs analyzed, 69 were for phase I trials and 66 for phase II trials. Primary reasons cited for slow accrual were safety/toxicity (phase I: 48%), design/protocol concerns (phase I: 42%, phase II: 33%), and eligibility criteria (phase I: 41%, phase II: 35%). The most commonly proposed corrective actions were adding institutions (phase I: 43%, phase II: 85%) and amending the trial to change eligibility or design (phase I: 55%, phase II: 44%). Only 40% of CAPs provided proposed corrective actions that matched the reasons given for slow accrual. Seventy percent of trials were closed to accrual at time of analysis (phase I = 48; phase II = 46). Of these, 67% of phase I and 70% of phase II trials met their primary objectives, but they were active three times longer than projected. Among closed trials, 24% had an accrual rate increase associated with a greater likelihood of meeting their primary scientific objectives. Ultimately, trials receiving CAPs saw improved accrual rates. Future trials may benefit from implementing CAPs early in trial life cycles, but it may be more beneficial to invest in earlier accrual planning. Clin Cancer Res; 22(22); 5408–16. ©2016 AACR. See related commentary by Mileham and Kim, p. 5397

Usability and Accessibility in Consumer Health Informatics

It is a truism that, for innovative eHealth systems to have true value and impact, they must first and foremost be usable and accessible by clinicians, consumers, and other stakeholders. In this paper, current trends and future challenges in the usability and accessibility of consumer health informatics will be described. Consumer expectations of their healthcare providers and healthcare records in this new era of consumer-directed care will be explored, and innovative visualizations, assistive technologies, and other ways that healthcare information is currently being provided and/or shared will be described. Challenges for ensuring the usability of current and future systems will also be discussed. An innovative model for conducting systematic, timely, user-centered research on consumer-facing websites at the National Cancer Institute (NCI) and the ongoing efforts at the National Institute of Standards and Technology (NIST) to promote health information technology (HIT) usability standards and evaluation criteria will also be presented.

Raising Public Awareness of Clinical Trials: Development of Messages for a National Health Communication Campaign

Clinical trials are essential for developing new and effective treatments and improving patient quality of life; however, many trials cannot answer their primary research questions because they fall short of their recruitment goals. This article reports the results of formative research conducted in two populations, the public and primary care physicians, to identify messages that may raise awareness and increase interest in clinical trials and be used in a national communication campaign. Results suggested that participants were primarily motivated to participate in clinical trials out of a self-interest to help themselves first. Messages illustrated that current treatments were tested via clinical trials, helped normalize trials as routine practices, and reduced concerns over trying something new first. Participants wanted messages that portray trials as state-of-the-art choices that offer some hope, show people like themselves, and are described in a clear, concise manner with actionable steps for them to take. The study revealed some differences in message salience, with healthy audiences exhibiting lower levels of interest. Our results suggest that targeted messages are needed, and that communication with primary health-care providers is an important and necessary component in raising patient awareness of the importance of clinical trials.

Leveraging national cancer institute programmatic collaboration for uterine cervix cancer patient accrual in Puerto Rico

Women in the U.S. Commonwealth of Puerto Rico (PR) have a higher age-adjusted incidence rate for uterine cervix cancer than the U.S. mainland as well as substantial access and economic barriers to cancer care. The National Cancer Institute (NCI) funds a Minority/Underserved NCI Community Oncology Research Program in PR (PRNCORP) as part of a national network of community-based health-care systems to conduct multisite cancer clinical trials in diverse populations. Participation by the PRNCORP in NCI’s uterine cervix cancer clinical trials, however, has remained limited. This study reports on the findings of an NCI site visit in PR to assess barriers impeding site activation and accrual to its sponsored gynecologic cancer clinical trials. Qualitative, semi-structured individual, and group interviews were conducted at six PRNCORP-affiliated locations to ascertain: long-term trial accrual objectives; key stakeholders in PR that address uterine cervix cancer care; key challenges or barriers to activating and to enrolling patients in NCI uterine cervix cancer treatment trials; and resources, policies, or procedures in place or needed on the island to support NCI-sponsored clinical trials. An NCI-sponsored uterine cervix cancer radiation–chemotherapy intervention clinical trial (NCT02466971), already activated on the island, served as a test case to identify relevant patient accrual and site barriers. The site visit identified five key barriers to accrual: (1) lack of central personnel to coordinate referrals for treatment plans, medical tests, and medical imaging across the island’s clinical trial access points; (2) patient insurance coverage; (3) lack of a coordinated brachytherapy schedule at San Juan-centric service providers; (4) limited credentialed radiotherapy machines island-wide; and (5) too few radiology medical physicists tasked to credential trial-specified positron emission tomography scanners island-wide. PR offers a unique opportunity to study overarching and tactical strategies for improving accrual to NCI-sponsored gynecologic cancer clinical trials. Interview findings support adding and re-tasking personnel for coordinated trial-eligible patient referral, accrual, and treatment.