What first comes to mind when you think of clinical research? My mind directly goes to thoughts of doctors with white lab coats, experimental treatments, expensive drugs and infamous cancer trials. One thing that doesn’t seem to come to mind is patient-centeredness and stakeholder engagement. This is something that one research institute is attempting to change and shatter the current norms of the clinical trial world.
Patient-Centered Research Outcomes Institute (PCORI) is literally one of a kind (the only 501(c) in the country) non-profit organization whose main mission is to change the conduct of clinical research by engaging patients and other stakeholders in the research process. This could include patients’ involvement in the design of research topics, desired outcomes, patient recruitment and even data analysis and dissemination. The thought is that stakeholder involvement will make research more efficient, results will be disseminated more quickly and the quality of clinical research will be improved.
PCORI was mandated under the Affordable Care Act by Congress in 2010 and today has funded over 500 research studies ranging from exploring alternative pain treatment options to using community health workers in the delivery of health care interventions.
This organization is one to keep in eye out for especially since they are up for reauthorization by Congress in 2019.
Unless you have been living under a rock the past few months you are well aware of the social tension amongst citizens of the United States. Don’t get me wrong, it has never been ideal, but since the election of President Trump, we have been a country far from united.
In the first month following the 2016 election, there were over 1,000 race-related incidents. While the monthly rates have decreased, the overall occurrence of these incidents continues daily. I’m not here to take sides or point fingers, but instead, look at hate crimes from an often overlooked perspective.
The psychological and physiological damage accumulated by those who face routine discrimination is now considered by many as a public health concern in and of itself. Data from the American Psychological Association shows the impact of discrimination and racism can increase rates of chronic stress, depression, and anxiety; while a meta-analysis compiled by Cambridge University has shown it increases rates of the common cold, hypertension, cardiovascular disease and breast cancer.
While data continues to develop, it is now obvious how snide remarks and hateful actions do much more than simply hurt feelings. In times like these, it’s important to take an introspective look and ask what we are doing in response to this climate of hate.
Dr. Martin Luther King Jr. said it best, “Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”
Ebola is a severe virus disease that spreads to humans from wild animals (often those found in rain forests), and can then be transmitted from human to human. The virus will onset between 2 to 21 days of exposure, and can cause fever, muscle pain, headaches and sore throats, followed by vomiting, diarrhea, impaired kidney/liver function, and bleeding. Though there are treatments, and re-hydration helps, there is as of yet no cure or licensed treatment to neutralize the virus.
In March of 2014, the World Health Organization recognized an outbreak of Ebola in West Africa–the largest one to date, and fatal in an estimated 40% of cases. It spread quickly in both rural and urban communities. The CDC reported, as of April 2016, 11,325 deaths.
An article published in The Lancet-an infectious disease academic journal- this month says that this outbreak “highlighted the need for a safe, effective vaccine with a rapid onset of protection”. A phase 1 study (the stage of vaccine development in which a vaccine is administered to what is considered a small group of adults) was completed in June of 2015 and demonstrated some success. Nearly 500 participants finished the study, which lasted 360 days, and most of them showed promising amounts of lasting immunity starting about two weeks into the study. The study was led by scientists at the World Health Organization.
Of course, the study was just short of a year, and in a relatively small sample size, so there is future research to be done. Still, the potential protection offered by a successful vaccine is an exciting thought.
World Health Organization: http://www.who.int/mediacentre/factsheets/fs103/en/
Suppose you just sneezed into your hands. I would recommend trying to sneeze into the elbow crease, but things happen. Anyway, now that your hypothetical hands are sneeze covered, what do you do? Of course, you need to clean them. You have two options, use the hand sanitizer nearby or go to the bathroom and wash them with soap and water. Which do you think is better at sanitizing the hands, killing the germs, and preventing the spread of disease?
The CDC recommends washing hands with soap and water when it is available because it is the most effective method for reducing the number of microbes. Hand sanitizers without alcohol do not kill all germs, can promote germ resistance, reduces the growth of the germs without killing them completely, and may cause skin irritation. Hand sanitizers with alcohol are better, but still do not eliminate all types of germs including Cryptosporidium, norovirus, and Clostridium difficile. If you are going to use hand sanitizers, opt for hand sanitizers containing at least 60% alcohol.
When your hands are visibly dirty, always use soap and water to clean them. The CDC and numerous studies support evidence that hand sanitizers are effective when used on slightly dirty hands, such as after daily activities in typical hospitals or office settings, but are ineffective when used after dirtier activities, such as playing sports, gardening, or camping. If hands are exposed to hazardous chemical substances, use soap and water to wash your hands; hand sanitizers were not made to remove or neutralize chemicals and they may be ineffective or exacerbate skin irritation or damage.
So, in our hypothetical sneeze situation, find a sink and wash your hands correctly. If that is not an option, use the hand sanitizer; it’s better than nothing. Just remember to wash your hands as soon as soap and water is available, avoid contact with public surfaces, and don’t touch your face. Other ways to reduce the spread of disease include:
Get vaccinated, including yearly flu vaccinations and booster shots
Use antibiotics sensibly, don’t take antibiotics to fight a viral infection
Disinfect bathrooms and kitchens regularly, such as wiping surfaces and washing towels
Practice safe sex, such as using a condom
Stay home when you’re sick, both from work and going to public spaces
Be smart about food preparation, such as cooking meat thoroughly
Don’t share personal items, such as toothbrushes or lipstick
CDC data estimates that 26.8% of families report significant financial burden due to medical costs (Cohen & Kirzinger, 2014) and this figure is expected to grow as insurance premiums, drug prices, medical procedures, and health facility overhead costs continue to rise each year. In addition, the aging US population is using more health services which drives everyone’s costs higher (Patton, 2015; Mitka, 2013).
Unfortunately, cancer is one of the most common and most expensive medical conditions. Cancer diagnosis, treatment, and rehabilitation are all lengthy, complex processes that require a variety of medical experts (Mitka, 2013). All of the visits, time, supplies, machines, therapies, medicines, personnel, etc. required adds to a patient’s out-of-pocket costs. (Zafar & Abernethy, 2013). However, there are not just monetary costs. Depending on the type and stage of cancer, thousands of dollars of lost wages can accumulate due to the time taken off from work to travel to appointments and receive treatments. This causes more financial stress on the patient because they are earning less income while their expenses are increasing (Zafar & Abernethy, 2013).
In the cancer community, the term financial toxicity has gained popularity. Financial toxicity refers to how the cost of a disease and its treatment impacts quality of life (University of Chicago, 2016), like how chemical toxicity effects health. Financial toxicity encompasses all aspects of wellness: physical, emotional, social, occupational, financial, and spiritual. Increased medical costs, and thus financial toxicity, is associated with decreased treatment adherence, worse patient outcomes, and lower self-reported quality of life (Shankaran & Ramsey, 2015; Zafar & Abernethy, 2013).
Financial toxicity should be treated as a symptom of cancer. Discussing personal finances in America is largely taboo, but this cultural norm should be challenged in the healthcare field. Doctor’s should assess the financial situations of their patients and use that information to help inform what the best mode of treatment will be (Shankaran & Ramsey, 2015). There are numerous ways to treat cancer and some are drastically more expensive than others. People may argue that the price tag of a treatment can never outweigh the price of life and that is valid; however, a health professionals must assess each patient’s priorities, both personally, medically, and financially to determine the healthiest individualized treatment path (Emanuel & Steinmetz, 2013; Shankaran & Ramsey, 2015). This does not necessarily mean that poor patients with receive cheaper and lower quality care. If a doctor is aware of a patient’s financial status, he/she can refer the patient to a hospital social worker who can assist in securing charitable funding or grant money to help pay for treatment (Shankaran & Ramsey, 2015). Until the issues of medical spending and insurance are solved, which will unfortunately not occur overnight, health professionals and patients must communicate more effectively to find the optimal comprehensive treatment to achieve the best overall quality of life for each individual (Emanuel & Steinmetz, 2013).
Cohen, R.A. & Kirzinger, W.K. (2014) Financial burden of medical care: A family perspective. NCHS data brief, no 142. Hyattsville, MD: National Center for Health Statistics.
Emanuel, E.J., & Steinmetz, A. (2013) Will Physicians Lead on Controlling Health Care Costs?. JAMA; 310(4):374-375.
Mitka, M. (2013). IOM Report: Aging US Population, Rising Costs, and Complexity of Cases Add Up to Crisis in Cancer Care. JAMA; 310(15):1549-1550.
Ramsey, S., Blough, D., Kirchhoff, A., Kreizenbeck, K., Fedorenko, C., Snell, K., Newcomb, P., William Hollingworth, W., & Overstreet, K. (2013) Washington state cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis. Health Aff; 10.1377/hlthaff.2012.1263.
Shankaran, V. & Ramsey, S. (2015) Addressing the Financial Burden of Cancer treatment from Copay to Can’t Pay. JAMA Oncol; 1(3):273-274.
Shankaran, V., Jolly, S., Blough, D. & Ramsey, S. (2012). Risk factors for financial hardship in patients receiving adjuvant chemotherapy for colon cancer: A population-bases exploratory analysis. J Clinical Onclology; 14:1608-1614.
Zafar, S.Y. & Abernethy, A.P. (2013). Financial toxicity, part I: A new name for a growing problem. Oncology; 27(2):80-149.
What is World AIDS Day? World AIDS Day is held on December 1 every year, and is an opportunity for individuals worldwide to unite in the fight against HIV, show their support for people living with HIV, and remember those who have died from HIV. World AIDS Day was the first ever global health day, held for the first time in 1988.
HIV stands for human immunodeficiency virus. If left untreated, HIV can lead to the disease AIDS (acquired immunodeficiency syndrome). No effective cure for HIV currently exists, but with proper treatment and medical care, HIV can be controlled.
The CDC estimates that roughly 1.2 million people in the United States are living with HIV, and nearly 1 in 8 of these 1.2 million are not aware that they are infected. As many as 50,000 people become newly infected each year, with men who have sex with men and African American heterosexual women being the two groups with the most new HIV infections. The Southern United States experiences the highest number of new diagnoses each year followed by the Northeast, West, and Midwest.
The only way to know if you have HIV is to get tested. You can get tested at your healthcare provider, and most medical clinics, substance abuse programs, community health centers, and hospitals offer them as well. Home testing kits are also available. On World AIDS Day, many community organizations host testing and awareness events in order to increase awareness of and decrease stigma surrounding HIV/AIDS.