Looking at research consent forms through a participant-centered lens: the PRISM readability toolkit.

Communicating in lay language is an underdeveloped skill among many researchers-a limitation that contributes to low readability among research consent forms and may hinder participant understanding of study procedures and risks. We present the Project to Review and Improve Study Materials (PRISM) and its centerpiece, the PRISM Readability Toolkit. The toolkit provides strategies for creating study materials that are readable and participant centered, focusing on consent forms but also addressing other participant materials. Based on plain language principles, this free resource includes a flexible menu of tools, such as an editing checklist, before and after examples, easy-to-read template language, and a list of alternative words. Among PRISM's ongoing goals is to test the toolkit with populations groups.

Web-based smoking-cessation programs: results of a randomized trial.

BACKGROUND: Initial trials of web-based smoking-cessation programs have generally been promising. The active components of these programs, however, are not well understood. This study aimed to (1) identify active psychosocial and communication components of a web-based smoking-cessation intervention and (2) examine the impact of increasing the tailoring depth on smoking cessation. DESIGN: Randomized fractional factorial design. SETTING: Two HMOs: Group Health in Washington State and Henry Ford Health System in Michigan. PARTICIPANTS: 1866 smokers. INTERVENTION: A web-based smoking-cessation program plus nicotine patch. Five components of the intervention were randomized using a fractional factorial design: high- versus low-depth tailored success story, outcome expectation, and efficacy expectation messages; high- versus low-personalized source; and multiple versus single exposure to the intervention components. MEASUREMENTS: Primary outcome was 7 day point-prevalence abstinence at the 6-month follow-up. FINDINGS: Abstinence was most influenced by high-depth tailored success stories and a high-personalized message source. The cumulative assignment of the three tailoring depth factors also resulted in increasing the rates of 6-month cessation, demonstrating an effect of tailoring depth. CONCLUSIONS: The study identified relevant components of smoking-cessation interventions that should be generalizable to other cessation interventions. The study also demonstrated the importance of higher-depth tailoring in smoking-cessation programs. Finally, the use of a novel fractional factorial design allowed efficient examination of the study aims. The rapidly changing interfaces, software, and capabilities of eHealth are likely to require such dynamic experimental approaches to intervention discovery.

The quality of cancer patient experience: perspectives of patients, family members, providers and experts.

BACKGROUND: Anecdotes and limited evidence suggest that a significant percentage of cancer patients encounter troublesome problems in the course of their care. METHODS: The authors collected data about barriers to and facilitators of high-quality cancer care and innovative solutions to improve quality from three sources: focus groups with patients, family members of cancer patients and providers; site visits to cancer care providers and organisations in three American communities; and expert interviews. RESULTS: The authors' respondents consistently described a similar list of problems facing the individual with a suspicion or diagnosis of cancer and his/her family: delays in and lack of coordination of care, patient information gaps and passivity, inadequate attention to emotional and social problems, and difficulty accessing services because of inadequate insurance, limited financial resources or rural residence. The fragmentation and uncertain accountability of cancer care contribute to these issues. Respondents recommended linking patients with a care navigator or manager, using computer technology to better inform and support patients and connect providers, and reforming provider reimbursement to encourage more patient-centred care. CONCLUSIONS: Cancer patients and their families have urgent needs for information and support especially early in their course. To meet these needs, early cancer care must be better organised, integrated, and patient centred. The Institute of Medicine's Model for the Delivery of Psychosocial Services appears to provide a relevant guide to delivering cancer care that better meets patient and family needs.

Understanding high-quality cancer care: a summary of expert perspectives.

BACKGROUND: The Institute of Medicine (IOM) report Crossing the Quality Chasm proposed 6 aims for high-quality healthcare: effective, safe, timely, efficient, equitable, and patient-centered, and emphasized care coordination. Through interviews with nationally recognized experts in healthcare quality, perspectives on barriers and facilitators to achieving these aims for cancer patients were elicited. METHODS: In all, 23 peer-nominated experts with diverse backgrounds in policy, healthcare, patient advocacy, and research were individually interviewed. They were asked about barriers and facilitators to achieving high-quality cancer care, and information technology or other innovations that might improve the quality of cancer diagnosis, treatment, and surveillance. Interviews were tape-recorded and transcribed. Two analysts independently reviewed and coded each transcript using ethnographic software to elucidate key themes. RESULTS: The major perceived barrier to providing high-quality cancer care was unnecessary variation in cancer care because of lack of standardization or adherence to guidelines during diagnosis, treatment, and surveillance. Additional barriers included insufficient teamwork and communication among multidisciplinary care teams, lack of patient awareness and empowerment, diagnostic delays during provider transitions, and excessive reimbursement for treatment. Experts suggested improving cancer patients' experiences by standardizing care, adhering to guidelines, and using "patient navigators" and an interoperable electronic medical record accessible to patients and providers at multiple facilities. CONCLUSIONS: Some of these solutions have been developed and tested, whereas others have not. It is hoped that these suggestions provide impetus for new research, accelerating progress toward achieving the IOM's vision for high-quality cancer care.

Insurance coverage and incentives for weight loss among adults with metabolic syndrome.

OBJECTIVE: To describe how insured adults with metabolic syndrome respond to various options for insurance coverage and financial incentives for weight management. METHODS AND PROCEDURES: Insured adults meeting the criteria for the metabolic syndrome were randomly identified through automated medical records and invited to participate in a telephone-based survey of the acceptability of various weight management programs-with different financial incentives and insurance coverage options-in a health maintenance organization. Multivariable logistic regression models were used to test the relationship between participant characteristics and the odds of being motivated by incentives. RESULTS: One hundred and fifty-three adults with the metabolic syndrome completed the survey (i.e., 79% of telephone contacts). A hypothetical increase in insurance coverage from 10 to 100% led to a threefold increase among women and a sevenfold increase among men in the proportion reporting they were "very interested" in enrolling in a weight management program within the next 30 days. Most participants (76% of women and 57% of men) supported a health plan-sponsored financial incentive program tied to weight loss, and 41% believed such a program would motivate them to lose weight. The mean financial incentive proposed for a 15-pound weight loss was $591 (median: $125). DISCUSSION: Although weight loss is an effective treatment for metabolic syndrome, standard health insurance rarely covers intensive behavioral treatment. The results of this study suggest that providing full insurance coverage and financial incentives for weight management increases the interest in participating in obesity treatment programs. Further research should determine how full coverage and incentives affect participation rates, long-term body weight changes, and costs.