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Biomedical subjects

James E Till

Publications and source records attributed to James E Till.

8 recordsLinked to original sources
PubMed2003

Evaluation of support groups for women with breast cancer: importance of the navigator role.

BACKGROUND: At least some forms of breast cancer are increasingly being viewed as a chronic illness, where an emphasis is placed on meeting the various ongoing needs of people living with cancer, their families and other members of their social support networks. This commentary outlines some approaches to the evaluation of cancer-related support groups, with a particular emphasis on those designed to provide long-distance support, via the internet, for women with breast cancer. DISCUSSION: The literature on evaluations of community-based cancer support groups indicates that they offer a number of benefits, and that it is more reasonable to expect an impact of such interventions on psychosocial functioning and/or health-related quality of life than on survival. The literature on both face-to-face and online social support groups suggests that they offer many advantages, although evaluation of the latter delivery mechanism presents some ethical issues that need to be addressed. Many popular online support groups are peer-moderated, rather than professionally-moderated. In an evaluation of online support groups, different models of the role of the "navigator" need to be taken into account. Some conceptual models are outlined for the evaluation of the "navigator role" in meeting the informational, decisional and educational needs of women with breast cancer. The Breast-Cancer Mailing List, an example of an unmoderated internet-based peer-support group, is considered within the context of a Shared or Tacit Model of the navigator role. CONCLUSION: Application of the concept of a "navigator role" to support groups in general, and to unmoderated online ones in particular, has received little or no attention in the research literature. The navigator role should be taken into account in research on this increasingly important aspect of cancer communication.

Breast Neoplasms↗
PubMed2003

Finding Canadian cancer clinical trials on the Internet: an exploratory evaluation of online resources.

BACKGROUND: Online information about the availability of clinical trials promises to enhance the accrual of patients into trials. The primary objective of our study was to assess the completeness of online databases of breast cancer clinical trials available in Canada. METHODS: Eligible online resources were identified through a search of MEDLINE (articles published from 1966 to January 2002), an Internet search with Google, examination of Web sites of cancer organizations and information from experts. Resources were included if they contained information about open, active cancer clinical trials available in Canada. Web sites reviewed were not limited to those based in Canada. For each eligible resource, the number of listed trials and the proportion of trials identified were calculated. RESULTS: Of 30 Web sites identified, 8 met all of the inclusion criteria; 3 were based in Canada and 5 in the United States. The total number of breast cancer trials identified as being available in Canada was 28. The Physician Data Query (PDQ) Clinical Trials Database of the US National Cancer Institute (cancer.gov/search/clinical_trials) identified 86% (24/28). The database of the National Cancer Institute of Canada Clinical Trials Group (NCIC CTG) (ctg.queensu.ca) identified 29% (8/28) of the available breast cancer trials. CenterWatch Clinical Trials Listing Service (centerwatch.com) identified 4% (1/28). INTERPRETATION: If the PDQ database included all of the NCIC CTG trials, it would become the most complete database of breast cancer clinical trials currently available in Canada. Online cancer data sources should strive to make access to clinical trials simpler and more reliable, particularly for residents of the country where the trial is to be conducted.

Canada↗
PubMed1995

Principlism and the ethical appraisal of clinical trials.

For nearly two decades, the process of reviewing the ethical merit of research involving human subjects has been based on the application of principles initially described in the U.S. National Commission's Belmont Report, and later articulated more fully by Beauchamp and Childress in their Principles of Biomedical Ethics. Recently, the use of ethical principles for deliberating about moral problems in medicine and research, referred to in the pejorative sense as "principlism", has come under scrutiny. In this paper we argue that these principles can provide a foundation for the source of ethical appraisal of human research, but are not themselves wholly adequate for this purpose. Therefore, we further propose that (1) principles should be understood as heuristics that can be "specified" as described by De Grazia (1992), and (2) that the principle-based approach should be supplemented by formally incorporating "sensitivity to context" into the evaluation of clinical trials.

Altruism↗
PubMedDate not supplied

Success factors for open access.

Open access to the peer-reviewed primary research literature would greatly facilitate knowledge transfer between the creators and the users of the results of research and scholarship. Criteria are needed to assess the impact of recent initiatives, such as the Budapest Open Access Initiative. For example, how many open-access research journals exist within a given field, and what is the reputation of each one? And, how many openly-accessible institutional e-print archives have been created and how many are actually are being used by researchers and scholars? A simple approach to an assessment of the open-access portion of the medical literature is described, and some preliminary results are summarized. These preliminary results point to the need for incentives to foster the implementation of initiatives such as the Budapest Open Access Initiative. An example of an incentive model is proposed, where an agency or foundation that provides peer-reviewed grants-in-aid to researchers establishes an e-print archive. Only current grantees of the agency would be eligible to post reports about the results of research projects or programs that have been supported by the agency. Some advantages and implications of this particular model are outlined. It is suggested that incentive models of this kind are needed to increase the likelihood that open access to the primary medical research literature will soon reach a "tipping point" and move quickly toward wide acceptance.

Access to Information↗