Telenursing in hospice palliative care: an innovative program in B.C. (Week 7)

Artifact: "Telenursing in hospice palliative care": an innovative program in B.C.

While researching the different ways that electronic health care is used in clinical practice settings, I found an interesting article that discusses an innovative telenursing program for patients in palliative care. In the last months and weeks of life many terminally ill Canadians choose to be at home and are cared for my their family and friends, with possible additional supports from nurses (Roberts, Tayler, MacCormack, & Barwich, 2007). However, for these patients and  their families there are few health care services that are accessible in the evening and through the night. In order to provide better access to services with palliative patients and their families B.C. NurseLine (a teletriage and health information call center), the British Columbia Ministry of Health, and the Fraser Health Hospice Palliative Care Program collaborated to create an innovative after hours telenursing service specific to palliative care (Roberts, Tayler, MacCormack, & Barwich, 2007).
When patients are admitted in the telenursing program they are given a special number to call if they are in need of health care services between 9 p.m. and 8 a.m. When patients or their family call, they are connected to an RN who can provide them with information and support (Roberts, Tayler, MacCormack, & Barwich, 2007). If the callers require more specialized knowledge related to palliative care the RN can contact an on call PRN, who will then contact the caller and provide the necessary support. Furthermore, the PRN can contact an on call physician to seek further advice or new orders.
Feedback from patients who have used the telenursing service suggest that the service is effective in providing support to palliative patients and their families. Data from the programs indicate that the service helps to keep patients at home through the night rather than going to an emergency department;  91% of callers reported that they were able to stay home through the night with the support of the telenurses(Roberts, Tayler, MacCormack, & Barwich, 2007). Other benefits of the program have been identified as improved symptom management and enhanced support of caregivers(Roberts, Tayler, MacCormack, & Barwich, 2007).
The effectiveness of this telenursing program suggest that it would be beneficial to create similar programs in other Canadian provinces.

Reference

Roberts,D., Tayler, C., MacCormack, D., & Barwich, D. (2007). Telenursing in hospice palliative care.

     The Canadian Nurse, 103(5), 24-7. Retrieved from http://www.canadian-nurse.com/

Canadian's attitudes concerning genetic privacy

When reflecting on the issue of genetic discrimination, I decided to further explore how Canadian's feel about genetic privacy. Despite the fact that the data I found is not specific the genetic privacy in the context of health care setting, it reflects the general attitude regarding genetic privacy. 

The 2011 Canadians and privacy survey (presented by the Office of the Privacy Commissioner of Canada) gathered data regarding Canadian's attitudes towards genetic privacy.

The survey indicates that the majority of Canada are concerned about the issue of genetic privacy and how it might impact their insurance and employment (PRIV, 2011). 

When asked their opinion regarding companies who offer genetic testing Canadian's reported the following: 

• 79% - are concerned about the genetic information being used in a disclosed or unauthorized way by the company 
• only 6% - indicated they had no concerns about the information being used in an unauthorized manner
• 78% - are concerned about giving the information to organizations that are not subject to health privacy regulations 
• 50% are concerned they may be required to provide the results to insurance companies 

Images retrieved from: https://www.priv.gc.ca/information/por-rop/2011/por_2011_01_e.asp#toc3d

Reference
Office of the Privacy Commissioner of Canada. (2011). 2011 Canadians and Privacy Survey. Retrieved    
      from https://www.priv.gc.ca/information/por-rop/2011/por_2011_01_e.asp#toc3d

Genetic discrimination and the Huntington's Society of Canada

The video below comes from the Huntington Society of Canada. It explores the consequences of genetic discrimination in regards to having a genetic test performed to see if a person will develop Huntington's disease. Furthermore, the video advocates for measures to protect Canadians from genetic discrimination.  

Reference
Huntington Society of Canada (Producer). (2013). Huntington Society of Canada: Do you really want 

     to know? [ video]. Available from https://www.youtube.com/watch?v=xAO3CLWWJfQ

Week 9: Personalized Health Care and Pharmacogenomics. An exciting innovation in health-care or a dangerous tool?

The focus of this week's discussion in my health informatics class is electronic health technologies in clinical practice settings. The concepts of personalized medicine and pharmogeconomics were discussed. 

I researched the definitions of each concept (personalized medicine, pharmacogentics, and pharmacogenomics), to further enhance my understanding of the concepts after the class discussion. 

Definitions : 

"Personalized medicine refers to the delivery of health care based on the individual uniqueness of the person. It utilizes individual's genetic and genomic information to make medical decisions about their care..." (Chadwell, 2013, pg. 1) 

 Pharmacogenetics is defined as ‘‘the study of inherited differences in drug metabolism and response’’. (Chadwell, 2013, pg. 1) 

 Pharmacogenomics as known as ‘‘the general study of all the many different genes that determine drug behavior" (Chadwell, 2013, pg. 1) 

Throughout the class discussion both the possible benefits and consequences of personalized medicine were discussed. I created a list of benefits and consequences to organize the information . 

  Benefits of Personalized Medicine: 

• improves the ability to diagnose and predict disease (Chadwell, 2013)
• contributes to providing interventions earlier in the course of diseases (Chadwell, 2013)
• may lead to the development of  customized and personalized prescriptions (Issa, 2007)
• improves patient compliance (Issa, 2007)
• reduces or completely eliminates the  costs related to disease management (Issa, 2007) 
• supports a client-centered care (Chadwell, 2013) 

Consequences/ challenges of personalized medicine: 

• genetic discrimination 
• issues in ensuring equitable access to genomic technologies (Issa, 2007) 
• issues in ensuring privacy and confidentiality of genetic information (Issa, 2007) 
• issues related to the use of genetic information by insurance companies and employers (Issa, 2007) 
• psychological impact of knowing genetic information (Issa, 2007) 
• the possibility of social stigmatization for patients based on their genetic information (Issa, 2007) 

Genetic discrimination in Canada 

Through the class discussion,I become interested in the issue of genetic discrimination in Canada and I decided to further explore the topic. 

In Canada, there are some regulations that indirectly inform the issue of genetic discrimination. For example, it is a right under the Canadian Charter of Human Rights and Freedoms that addresses the right to equality and to not be subjected to discrimination (CCGF,2009). However, there are NO legal documents that specifically address and prohibit genetic discrimination (CCGF, 2009). Furthermore, Canadian laws permit insurance companies to have requirements related to providing health information and this information can be used to determine eligibility for insurance and to set premiums ( CCGF, 2009). In addition, insurers can ask clients about their genetic information, family history, and must consent to have their information verified (CCGF, 2009). 

After exploring the laws and regulations around genetic discrimination in Canada, I was left with the following questions: 

 How might genetic discrimination impact people's social determinants of health? How does genetic discrimination ultimately impact people's health?  

In nursing it is important to consider the social determinants of health when assessing clients, and to provide holistic care. Genetic discrimination has the ability to impact a person's social determinants; therefore, it is an important issue for nurses to consider. Genetic discrimination by employers and insurance companies can lead to unemployment and low socio-economic status. In addition, the fear of genetic discrimination from employers and insurance companies may prevent people from participating in genetic testing (CCGF, 2009). Genetic testing benefits individuals by empowering them to be proactive about their health, plan of their future, and make important life decisions (CCGF, 2009); therefore, if people are too afraid to get tested they will not get the benefits. 

In reflection

In the overview for this weeks class we we're asked to reflect on the following questions: 

What are your beliefs about personalized medicine, or, genomic investigations related to your DNA sequencing? Would you want to know if you had a massive predisposition to illness or a specific medical condition? 

Through the information that I have gathered from the class discussion and researching personalized medicine, I feel that the benefits of personalized medicine outweigh the possible consequences. Although, I feel strongly that  a personalized medicine approach should not be integrated into the Canadian health-care system until Canada creates laws that protects its citizens from genetic discrimination. 

References

Chadwell, K. (2013). Clinical practice on the horizon: Personalized medicine. Clinical Nurse Specialist, 

      27(1), 36-43. doi: 10.1097/NUR.0b013e31827770301000-00010

Issa, A. M. (2007). Personalized medicine and the practice of medicine in the 21st century. McGill Journal 

     of   Medicine, 10(1), 53–7. Retrieved from http://www.med.mcgill.ca/mjm/  

N.A. (2009). About genetic discrimination. Retrieved from the Canadian Coalition for Genetic Fairness          website: http://www.ccgf-cceg.ca/en/about-genetic-discrimination

Apomediation tools for health care consumers, and health care professionals

      After the class discussion I wanted to further explore apomediation tools and how they are being used in the health care sector. I have created a prezi to demonstrate and organize my learning: http://prezi.com/hqryxghx7_wf/?utm_campaign=share&utm_medium=copy

References

Cassa, C., Chunara, R., Mandl, K., & Brownstein, J. (2013). Twitter as a sentinel in emergency situation:

     Lessons from the Boston marathon explosions.PLoS Curr. 2013 July 2; 5:      

     ecurrents.dis.ad70cd1c8bc585e9470046cde334ee4b. doi: 10.1371/currents.dis.ad70cd1c8bc585e9470046cde334ee4b

Gawande, A. (2013, April 17). Why Boston's hospital's were ready. The New Yorker. Retrieved

     from http://www.newyorker.com/online/blogs/newsdesk/2013/04/why-bostons-hospitals-were-                    ready.html

Week 6: Consumer Health Informatics and e-health

This week my nursing informatics class discussed consumer health informatics and e-health.
One of the major themes that was discussed throughout the class was the concept of apomediation in the context of health care services. In class the term apomediation was defined as skipping the middleman and allowing patients to go directly to the source of information. I further explored the concept of apomediation in the assigned course article "Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness”. 

The article discusses the topic of apomediation as it relates to health care. According to Eysenbach, there are three ways in which health care consumers access information and services: 

1)      Health care providers directly giving information or providing health care services to a patient, or web portals that contain information only from health care experts. In this model the health care provider is viewed as the intermediary (or a middleman) between the patient and the information or service.

2)      In the second model the patient bypasses the middleman, in a process known as disintermediation, in order to access health care information or services. An example of this model is a patient searching for health information on the internet.

3)      The third way in which a patient can access health information is a subset of disintermediation known as apomediation. In the article Eysenback describes apomediation as people or tools which stand by to guide a consumer to high

quality information and services without being a prerequisite to obtain that information or service (Eysenback, 2008).

The article gives the following examples of apomediaries or apomediation tools:

·         Ratings in amazon.com or epinions.com

·         PICS or MedPICS labels (enable machine interpretation of user ratings)

·         Collaborative filtering and recommender systems (such as StumbleUpon.com)

·         second generation internet-based services and tools that let people collaborate on a massive scale and share information online

·         Social networking sites

·         Blogs

·         Wikis

References 
Eysenbach, G. (2008). Medicine 2.0: Social networking, collaboration, participation, 
apomediation, and openness. Journal of Medical Internet Research, 10(3), e22. 

doi:10.2196/jmir.1030