Background

Disease management programs, especially those based on the Chronic Care Model (CCM), are increasingly common in the Netherlands. While disease management programs have been well-researched quantitatively and economically, less qualitative research has been done. The overall aim of the study is to explore how disease management programs are implemented within primary care settings in the Netherlands; this paper focuses on the early development and implementation stages of five disease management programs in the primary care setting, based on interviews with project leadership teams.

Methods

Eleven semi-structured interviews were conducted at the five selected sites with sixteen professionals interviewed; all project directors and managers were interviewed. The interviews focused on each project’s chosen chronic illness (diabetes, eating disorders, COPD, multi-morbidity, CVRM) and project plan, barriers to development and implementation, the project leaders’ action and reactions, as well as their roles and responsibilities, and disease management strategies. Analysis was inductive and interpretive, based on the content of the interviews. After analysis, the results of this research on disease management programs and the Chronic Care Model are viewed from a traveling technology framework.

Results

This analysis uncovered four themes that can be mapped to disease management and the Chronic Care Model: (1) changing the health care system, (2) patient-centered care, (3) technological systems and barriers, and (4) integrating projects into the larger system. Project leaders discussed the paths, both direct and indirect, for transforming the health care system to one that addresses chronic illness. Patient-centered care was highlighted as needed and a paradigm shift for many. Challenges with technological systems were pervasive. Project leaders managed the expenses of a traveling technology, including the social, financial, and administration involved.

Conclusions

At the sites, project leaders served as travel guides, assisting and overseeing the programs as they traveled from the global plans to local actions. Project leaders, while hypothetically in control of the programs, in fact shared control of the traveling of the programs with patients, clinicians, and outside consultants. From this work, we can learn what roadblocks and expenses occur while a technology travels, from a project leader’s point of view.

Background

Many online physician-rating sites provide patients with information about physicians and allow patients to rate physicians. Understanding what information is available is important given that patients may use this information to choose a physician.

Objectives

The goals of this study were to (1) determine the most frequently visited physician-rating websites with user-generated content, (2) evaluate the available information on these websites, and (3) analyze 4999 individual online ratings of physicians.

Methods

On October 1, 2010, using Google Trends we identified the 10 most frequently visited online physician-rating sites with user-generated content. We then studied each site to evaluate the available information (eg, board certification, years in practice), the types of rating scales (eg, 1–5, 1–4, 1–100), and dimensions of care (eg, recommend to a friend, waiting room time) used to rate physicians. We analyzed data from 4999 selected physician ratings without identifiers to assess how physicians are rated online.

Results

The 10 most commonly visited websites with user-generated content were HealthGrades.com, Vitals.com, Yelp.com, YP.com, RevolutionHealth.com, RateMD.com, Angieslist.com, Checkbook.org, Kudzu.com, and ZocDoc.com. A total of 35 different dimensions of care were rated by patients in the websites, with a median of 4.5 (mean 4.9, SD 2.8, range 1–9) questions per site. Depending on the scale used for each physician-rating website, the average rating was 77 out of 100 for sites using a 100-point scale (SD 11, median 76, range 33–100), 3.84 out of 5 (77%) for sites using a 5-point scale (SD 0.98, median 4, range 1–5), and 3.1 out of 4 (78%) for sites using a 4-point scale (SD 0.72, median 3, range 1–4). The percentage of reviews rated ≥75 on a 100-point scale was 61.5% (246/400), ≥4 on a 5-point scale was 57.74% (2078/3599), and ≥3 on a 4-point scale was 74.0% (740/1000). The patient’s single overall rating of the physician correlated with the other dimensions of care that were rated by patients for the same physician (Pearson correlation, r = .73, P < .001).

Conclusions

Most patients give physicians a favorable rating on online physician-rating sites. A single overall rating to evaluate physicians may be sufficient to assess a patient’s opinion of the physician. The optimal content and rating method that is useful to patients when visiting online physician-rating sites deserves further study. Conducting a qualitative analysis to compare the quantitative ratings would help validate the rating instruments used to evaluate physicians.

Background

When patients need health information to manage their personal health, they turn to both health professionals and other patients. Yet, we know little about how the information exchanged among patients (ie, patient expertise) contrasts with the information offered by health professionals (ie, clinician expertise). Understanding how patients’ experiential expertise contrasts with the medical expertise of health professionals is necessary to inform the design of peer-support tools that meet patients’ needs, particularly with the growing prevalence of largely unguided advice sharing through Internet-based social software.

Objective

The objective of our study was to enhance our understanding of patient expertise and to inform the design of peer-support tools. We compared the characteristics of patient expertise with that of clinician expertise for breast cancer.

Methods

Through a comparative content analysis of topics discussed and recommendations offered in Internet message boards and books, we contrasted the topic, form, and style of expertise shared in sources of patient expertise with sources of clinician expertise.

Results

Patient expertise focused on strategies for coping with day-to-day personal health issues gained through trial and error of the lived experience; thus, it was predominately personal in topic. It offered a wealth of actionable advice that was frequently expressed through the narrative style of personal stories about managing responsibilities and activities associated with family, friends, work, and the home during illness. In contrast, clinician expertise was carried through a prescriptive style and focused on explicit facts and opinions that tied closely to the health care delivery system, biomedical research, and health professionals’ work. These differences were significant between sources of patient expertise and sources of clinician expertise in topic (P < .001), form (P < .001), and style (P < .001).

Conclusion

Patients offer other patients substantial expertise that differs significantly from the expertise offered by health professionals. Our findings suggest that experienced patients do not necessarily serve as “amateur doctors” who offer more accessible but less comprehensive or detailed medical information. Rather, they offer valuable personal information that clinicians cannot necessarily provide. The characteristics of patient expertise and the resulting design implications that we identified will help informaticians enhance the design of peer-support tools that will help meet patients’ diverse information needs.

The AMIA Board of Directors has decided to periodically publish AMIA’s Code of Professional Ethical Conduct for its members in the Journal of the American Medical Informatics Association. The Code also will be available on the AMIA Web site at www.amia.org as it continues to evolve in response to feedback from the AMIA membership. The AMIA Board acknowledges the continuing work and dedication of the AMIA Ethics Committee. AMIA is the copyright holder of this work.

Recent medical informatics and sociological literature has painted the image of a new type of patient—one that is reflexive and informed, with highly specified information needs and perceptions, as well as highly developed skills and tactics for acquiring information. Patients have been re-named “reflexive consumers.” At the same time, literature about the questionable reliability of web-based information has suggested the need to create both user tools that have pre-selected information and special guidelines for individuals to use to check the individual characteristics of the information they encounter. In this article, we examine suggestions that individuals must be assisted in developing skills for “reflexive consumerism” and what these particular skills should be. Using two types of data (discursive data from websites and promotional items, and supplementary data from interviews and ethnographic observations carried out with those working to sustain these initiatives), we examine how users are directly addressed and discussed. We argue that these initiatives prescribe skills and practices that extend beyond finding and assessing information on the internet and demonstrate that they include ideals of consumerism and citizenship.