Day 5 (Sep. 13): Sorting through the Data

This week I was confronted by the full magnitude of the data and the responsibility needed to safeguard information that may lead to any misinterpretation in reporting statistics. Looking over data from Hawai'i: Cancer Facts & Figures 2010 (a sourcebook for planning & implementing programs for cancer prevention & control) I wanted to begin to narrow down the types of cancers I would focus on during this practicum. Two of my practicum objectives hoped to acquire a working knowledge of data use in assessing preferred screening and treatment plans for a certain region. At the moment, I am trying to determine which cancer site would be appropriate for assessing screening and treatment plans. At first glance, breast cancer in females or colorectal cancers offer both a diversity of screening techniques and treatment courses which may differ between regions.

Day 4 (Sep.12): Fact Sheet on the Hawai'i Tumor Registry

• Program Name: University of Hawai’i Cancer Center – Tumor Registry
• Located at 1236 Lauhala Street, Ste. 508 Honolulu, HI 96813
• Who is included in the registry?
• All reportable neoplasms in the catchment area (in some cases this includes benign tumors because some lead to mortality despite non-malignancy)
• Operating budget:
• $1.3 million
• Funding Source:
• National Cancer Institute (NCI) - Surveillance Epidemiology and End Result (SEER) program
• Services:
•  ID, collect, and maintain cases that come across Hawai’i (some may or may not be resident in Hawai’i)
• Tissue Repository for collected neoplasm cases
• Interstate collaborative efforts across registries
• Information sources:
• Cancer Data for Statistical Analysis

Day 3 (Sep. 9): Accreditation, Ethics, and the Tissue Repository

Ethics plays an important role in medical practice and research. As of 2009, the UHCC- tumor registry has 203,500 diagnosed cases on record dating back to 1960. This extensive collection of data can easily be overlooked as a study group, but if there is anything that today has taught me, it is that each human subject is entitled to a quality of care that will offer them a superior level of protection from harm, exploitation, and breach of privacy. UH and its various "silos" of IRBs are seeking accreditation by the Association for the Accreditation of Human Research Protection Program (AAHRPP). This would place the associated institutions amongst a small group of universities, hospitals, pharmaceutical companies, etc. that offer peer-set best practice standards of measurement based on federal human subject protection regulations that undergoes routine self-regulation and self-evaluation. Understanding the standard of service expected will be important as I start my CITI training on the protection of patient privacy, beneficence, and the importance of consent.

Day 2 (Sep.5): Looking Back to Plan for the Future

Some people say that there are never any truly new ideas. So, with this in mind, I've been looking into assessments in years past of Pacific tumor registries; specifically at the work that came out of the Pacific Health Dialog's Journal of Community Health and Clinical Medicine for the Pacific. I most recently finished the article- Cancer Incidence in Four Pacific Countries: Tonga, Fiji Islands, Cook Islands, and Niue. The article helped me begin to understand three things.  

1) Socioeconomic standards (in some part influenced by cultural history) dictate the quality and efficiency of information storage and assessment.

2) Prevalence of certain cancers can be influenced by a regions underlying issues (eg. citizens may be more susceptible hosts for infection) which is in turn linked to the quality and diversity of its health services.

3) In many cases, cancer may not be the direct result of a genetic predisposition for abnormality. It may be due to the influence of environmental stimuli.

Finally, I looked at lectures brought into educate the staff on everything from Human Anatomy & Physiology to Game Theory in Life to Statistical Analysis. After one lecture (Human Anatomy of the Cardiovascular System), I can definitely conclude that they will be a valuable informational source.

Day 1 (Sep. 4): And it begins...

So, today was the day to get organized. Despite planning this over the last few months, for some reason, being at the registry is reminding me of just how much there is to do. For now, I need to work on a tentative timeline of what I should have accomplished just so I don’t get complacent. Over the next few weeks, I would like to talk to registries in other catchment areas outside of Hawai’i. For today, I’ll list them out as well as their contact information. In addition, I wonder if I can be walked through the registry process from clinical diagnosis to hospital reporting to catchment region registry reporting to pacific region reporting. I feel like this might be a very complex process. So, I’ll be researching what I can about the process on the side.