Data Sharing and Bioinformatics

The exchange of data has many implications, some beneficial, but some risky. Consider the exchange of sensitive information, a dilemma that has a seemingly simple solution: That information should be protected. Yet, in a public health context, how does privacy complicate the possibility of improving outcomes across a population? For example, how can data drawn from genomic sequencing be protected and contribute to the body of knowledge? In this Discussion, you explore a similar question.

For this Discussion, consider the following scenario: 

You are a nurse geneticist who is working for a teaching and research hospital. Your position is to promote the provider use of genetic testing for a specific drug trial. While most physicians are eager to participate in the research, a provider who primarily treats patients with HIV is reluctant to use the trial on their patients and feels utilizing the database system is a violation of HIPAA.

As a nurse leader, describe the recommendation you might make to this provider and explain why.

· Search the Walden Library for a peer-reviewed journal article that contains research related to precision medicine to support your recommendation to the provider.

· The Walden Library recommends the following: 

o Navigate to the Nursing Research databases in the Walden Library. 

o Select a database with which to start. You can try more than one.

o Perform a basic search: precision medicine. Do not select any limiters yet.

o  Look at initial results, particularly if there are any recent books that might be helpful. Note that you can search within e-books for particular terms.

o  Add a second concept in Box 2 to focus your search. It helps to keep concepts separate, especially when multiple boxes are provided.

o  Example: HIPPA or Health Insurance Portability and Accountability Act 

o  At this point, look at the first page or two of results and refine depending on what you find. Notice any other relevant words or combinations of words that might focus your search further. Possible suggestions: privacy, security, confidentiality, ethics.

Mark A. Rothstein. Structural Challenges of Precision Medicine. The Journal of Law, Medicine & Ethics, 45 (2017): 274-279. doi: 10.1177/1073110517720655 

Wolf, L. E., Hammack, C. M., Brown, E. F., Brelsford, K. M., Beskow, L. M., Wolf, S. M., Clayton, E. W., & Lawrenz, F. (2020). Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law. Journal of Law, Medicine & Ethics, 48(1), 126–141. https://doi-org.ezp.waldenulibrary.org/10.1177/1073110520917000

o To apply limits, scroll down in the left column to limit by date (last 5 years) and limit the results to peer-reviewed scholarly journals only. It helps to do this after you know you have performed a successful search and identified possible synonyms and sub-topics.

o To retrieve the full text of individual items, click on the [email protected] button and follow the prompts. Sometimes this step takes persistence, since there are many different publishers supplying content to these databases.

By Day 3 of Week 5

Post a response that addresses in general and the research trial described in the scenario specifically. Be specific. Your post should include your approach for facilitating the reluctant physician’s use of the trial drug and reporting the needed data. Justify your role as the nurse informaticist as it pertains to the genetics trial drug use and reporting described in the scenario.

McBride, S., & Tietze, M. (2019). Nursing informatics for the advanced practice nurse: Patient safety, quality, outcomes, and interprofessionalism (2nd ed.). New York, NY: Springer Publishing.

· Chapter 11, “Electronic Health Records and Health Information Exchanges Providing Value and Results for Patients, Providers, and Healthcare Systems” (pp. 248–271)

· Chapter 13, “Public Health Data to Support Healthy Communities in Health Assessment Planning” (pp. 296–331)

· Chapter 15, “Personal Health Records and Patient Portals” (pp. 354–375)

· Chapter 16, “Telehealth and Mobile Health” (pp. 376–397)

· Chapter 22, “National Prevention Strategy, Population Health, and Health Information Technology” (pp. 532–555)

· Chapter 25, “Genomics and Implications for Health Information Technology” (pp. 610–637)

Note: Chapters 11 and 13, which were assigned in the previous week, are also applicable this week and are listed here for review purposes.

Shen, N., Bernier, T., Sequeira, L., Strauss, J., Silver, M. P., Carter-Langford, A., & Wiljer, D. (2019). Understanding the patient privacy perspective on health information exchange: A systematic review. International Journal of Medical Informatics, 125, 1–12.

Baseman, J. G., Revere, D., & Painter, I. (2017). Big data in the era of health information exchanges: Challenges and opportunities for public health. Informatics, 4(39), 1–10.

Orlova, A. O., Dunnagan, M., Finitzo, T., Higgins, M., Watkins, T., Tien, A., & Beales, S. (2005). An electronic health record-public health (EHR-PH) system prototype for interoperability in 21st century healthcare systems. AMIA Annual Symposium Proceedings, 2005, 575–579. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1560434/

Founds, S. (2018). Systems biology for nursing in the era of big data and precision health. Nursing Outlook, 66(3), 283–292.

Calzone, K. A., Kirk, M., Tonkin, E., Badzek, L., Benjamin, C., & Middleton, A. (2018). The global landscape of nursing and genomics. Journal of Nursing Scholarship, 50(3), 249–256. 

Cheng, M. L., & Solit, D. B. (2018). Opportunities and challenges in genomic sequencing for precision cancer care. Annals of Internal Medicine, 168(3), 221–222.