Adherence Issues for Autoimmune Patients

The American Autoimmune and Related Disease Association (AARDA) recently conducted a major research study focused on adherence issues and potential solutions in the autoimmune patient population. The study involved two surveys involving several hundred patients, and a series of follow-up, in-depth personal interviews with selected autoimmune patients. Lawrence Tobias planned, and coordinated survey development and implementation, conducted the interviews, analyzed the results and developed the summary report for AARDA. Results will be published by AARDA in the near future.

Managed Care Initiatives

During the last three years Mr. Tobias has collaborated with two leading managed market research companies on several major proprietary projects.

Transformative Archetypes

As Co-chair of the NY Metro Chapter of the Qualitative Research Consultants Association (QRCA), Mr. Tobias coordinated a chapter workshop on January 4th at the OMNI hotel in New Haven, CT. The topic of the workshop, attended by over thirty members of both the New England and NY Metro QRCA Chapters, involved Transformative Archetypes. The presenter, Ava Linberg, a cultural anthropologist by training, has a wealth of experience in this topical area, and provided an educational, stimulating and entertaining experience for the qualitative researchers assembled in the room. Her discussion provided some practical guides as to how transformative archetype research can build upon the rational techniques and the emotional projective techniques used in more traditional qualitative research, and provide valuable insights as to ingrained personal and cultural influences and tendencies inherent in all of us. Transformative archetypes can be a valuable tool to understand and influence consumer behavior, when traditional techniques are found lacking.

Briefing Paper on Paediatric Medicines and Clinical Research

Lawrence D. Tobias was the primary author of a Briefing Paper on Paediatric Medicines and Clinical Research which was commissioned by the International Alliance of Patients' Organizations (IAPO) and released for distribution in November of 2006. The paper took nearly a year to complete and involved an intensive search of the extensive available literature on the topic; a thorough understanding of the varied international paediatric clinical trial-related regulations; and interviews with over one dozen leading international experts in the area of paediatric medicines, paediatric regulations, and clinical trial ethics. Quoting from the introduction to the paper: "The lack of medicines approved specifically for children is of global concern. In Europe, it is estimated that more than half of the medicines used to treat children are either untested or unauthorized for paediatric use (European Commission, 2004). It is essential that medicines be developed specifically for children, because the alternatives of either no medication available or administering off-label medicines expose children to unacceptable and unethical risks to their health."

IAPO states that "Our paper aims to equip patient advocates with an understanding of the specific issues relevant to paediatric medicines and clinical trials. It gives an overview of the regulatory, social, ethical and economic issues, as well as a summary of the existing and potential benefits and risks related to the issue, all based on current evidence-based research and expert opinions.

We hope that making this information accessible to patients’ organizations worldwide will enable them to make an informed judgement on the value of clinical trials for paediatric medicines. Actively engaging in debate and discussion with patients and other stakeholders in healthcare on this issue is crucial so that the patient voice is represented in new and developing legislation and medications. This is particularly timely as new legislation on the regulation of medicinal products for paediatric use in the European Union is due to come into force at the beginning of 2007."

Jo Harkness of IAPO was coauthor on the paper and contributed to the section dealing with the ethics of conducting clinical trials in children.

Information regarding purchase of the briefing paper can be found on the IAPO website at http://www.patientsorganizations.org/showarticle.pl?id=762.

Conference on Plant-Made Pharmaceuticals

Larry will be an invited guest at the Conference on Plant-Made Pharmaceuticals which is being held in Montreal, January 30th through February 2nd, 2005. IAPO, The International Alliance of Patient's Organizations will be releasing a publication at the meeting: "The Use of Genetically Modified Plants to Produce Human Therapeutic Proteins: A Global Summary of Existing Potential Benefits and Risks" for which Larry was the author, interviewer and analyst.

Information regarding the conference can be found at www.cpmp2005.org. or via email at info@cpmp2005.org.

If you are interested in receiving a debrief of the meeting, or information regarding obtaining a copy of the indicated publication, or in working with Larry on related healthcare communications and marketing research projects, please contact Larry at TobiasL@optonline.net.

AMA Media Briefing: HIV/AIDS, The Drug Resistance Epidemic

On January 13th, Larry attended an American Medical Association Media Briefing in NYC on the topic of "HIV/AIDS: The Drug Resistance Epidemic." If you are interested in receiving a debrief of the meeting, or in working with Larry on related healthcare communications and marketing research projects, please contact Larry at TobiasL@optonline.net.

Information regarding the content this meeting and other AMA Media Briefings can be found at www.ama-assn.org/go/briefings. If you are interested in pursuing any medical communications projects or marketing research involving topics from any of these meetings, please contact Larry at TobiasL@optonline.net.

San Antonio Breast Cancer Conference

Larry was on assignment at The San Antonio Breast Cancer Conference from Dec. 9th-11th, 2004, conducting interviews regarding the management of anemia and neutropenia resulting from chemotherapy.

New Jersey Stem Cell Research Institute Conference

Larry was in attendance at the New Jersey Stem Cell Research Institute Conference which was held in New Brunswick, NJ on November 2, 2004.