About Me

Where do breast cancer patients & survivors get their information from?

When I was diagnosed with breast cancer, I knew almost nothing about the causes and treatments, and most importantly, I knew nothing about my personal risk. Since then, I have spent countless hours researching cancer, working closely with my medical team to discuss current research, and reading medical journals, clinical trials, GIS research, genetics research, nutritional research, and much more. I have also explored the impact of prayer and emotional well-being on cancer outcomes. Cancer is a complex disease, and while we still have a lot to learn about its causes, mutations, and how personalized medicine can target cancer cells, we have made significant progress in the last 20 years.

As a cancer patient, you are faced with numerous medical appointments, tests, recommendations, and choices to make - survivors sometimes call this the crazy train, as it moves quickly, makes little sense at first , and you can’t get off. Unfortunately, there is never an easy or good choice when it comes to cancer treatment, regardless of the stage. It is always advisable to seek a second opinion, as the treatment options may be unclear or come with debilitating side effects that must be weighed against the possibility of a reoccurrence or terminal cancer. Medical appointments may last up to 60 minutes at most, which is often not enough time to make an informed decision. That's why many patients conduct their own research by asking family and friends, reading medical journals, or searching for answers on cancer forums online.

Selecting a user group

Being a survivor means I have personal insight and investment into improving knowledge of cancer patients, and I wanted to find out how other breast cancer patients or their loved ones get information about their disease. 

Methodology

I devised a short anonymous  online survey to conduct my research, which I posted on an online forum about breast cancer. I chose this method because I wanted to reach people quickly and make it a short-term investment for anyone participating. I acknowledge that this research is based on a very small sample size. 

My questions aim to understand the following: 

• How much time a patient or loved one of a patient spends learning about breast cancer

• Where they get their information from 

• Where they turn to first with a question 

• How they rate their knowledge about breast cancer prior to a concern or diagnosis 

• How they rate their knowledge of breast cancer after to a concern or diagnosis 

• I also wanted to find out what pathway or device they gleaned most of the information

Participants 

I posted the survey to an online breast cancer forum and left the post up for 24 hours before deleting the post.  I also texted the link to several cancer survivor friends whom I have additional knowledge about. 

I received the answers from 19 individuals, and all answers except two were answered by all participants. 18/19 of the responders indicated they have been diagnosed with breast cancer. 

It's relevant to recognize that the majority of respondents rated their knowledge about breast cancer as 'nothing' or 'a little' before their diagnosis. At the time of this survey, over 10% of respondents rated themselves as 'expert', with the majority rating themselves as knowing 'quite a lot' about breast cancer and it's treatment. This illustrates that generally, people are not motivated to learn about breast cancer until it affects them personally, and then the motivation is very high to know about the disease. 

Understanding where people gain health information is essential.   I asked two questions to determine where information was sought and where a patient goes first for information. All respondents get information from in-person medical visits, and the survey revealed that in-person medical visits are not the first place information is received. This indicates that patients may perform their own research and seek information before a medical appointment. Empowered patients can make informed decisions about their care and health, and cancer patients today arm themselves with a certain amount of knowledge, often found in online forums, journals, and government websites.  

I wanted to understand how much time patients spent learning, discussing, and reading about their disease. Most patients responded they spent several hours each week, with some patients spending more than 200 hours a year informing themselves about breast cancer. Clearly, the diagnosis is the factor for investing so much time in learning about the disease; it’s probably accurate to say these patients are getting most of their information from outside of a medical office visit, based on time spent learning is far more than a typical medical visit. 

I wanted to understand better how health informatics can be applied to improve patient knowledge, so I asked how the respondents were getting their knowledge when not in a medical office: phone was the top choice, followed by PC, with just 6% reporting using a book or magazine and 6% reporting in-person conversations, such as a support group. These responses indicate that there is an opportunity for health informatics to improve and empower breast cancer patients to make informed medical decisions based on current research treatment options. Understanding what device and pathway a patient uses can spur the development of health apps or online forums. 

One more significant revelation is that 63% of respondents do not think they were informed about their breast cancer risk before diagnosis. The ages of respondents are from 29 - 68. This illustrates that women are not being empowered with information about their breast health and cancer risk unless they have a diagnosis or additional screening, often known as a 'cancer scare .'This risk information can also be used in health informatics to ensure providers are discussing personal risk: software programs specifically for women's health can be improved to ensure providers are not inadvertently avoiding a discussion on breast health and the risk of breast cancer. When I looked at individual submissions in the survey, I noted that the person who answered they had not been diagnosed with breast cancer also answered they were informed about their breast cancer risk. This individual is known to me personally as a 'previvor': someone who has undergone preventative treatment to reduce their risk of breast cancer. When looking at the responses, only 4/19 respondents felt they were informed about their risk of breast cancer, including the one 'previvor' who completed the survey. I would suggest further research is needed to determine the cancer rates concerning informed patients vs. uninformed patients. 

Summary

While this survey is limited, it demonstrates that breast cancer patients seek out health information after a diagnosis and spend a considerable amount of time learning about their diagnosis outside of a medical visit. As described by Sedrak1* et al., 59% of women over the age of 65 with a chronic health condition used the Internet to research their health condition. My survey encompasses a younger age group, yet clearly, women of all ages with significant health concerns are actively performing research often using online sources, journals, and forums to increase their knowledge. It is reported that 80% of women use online sources to gain health information (Dluhos-Sebesto et al., 2021).  It's imperative that women make informed decisions, and especially when it comes to serious health diseases such as breast cancer, women want to be informed after a diagnosis.   Physicians only have a few hours to discuss risks, side effects, and statistics with their patients. Thus,  women spend many hours navigating online forums, social media, and research journals. Crucially, women must recognize the difference between valid research and discerning that one patient's experience may not be their experience when they consider treatment options. One concern I have with gaining information from online forums is that so many of the experiences are negative and, at times, creates a community of fear and criticism, as well as offering support and information. Health informatics can support bringing technology and current valid research to the patient population, not just the physician. 

References:

Dluhos-Sebesto, C., Jethwa, T. E., Bertasi, T. G. O., Bertasi, R. A. O., Nishi, L. Y. M., Pantin, S. A. L., Argenio, S. L., Shahsamand, A., Omololu, A., & Pujalte, G. G. A. (2021). Women’s Health Information Survey: Common Health Concerns and Trusted Sources of Health Information Among Different Populations of Female Patients. Women’s Health Reports, 2(1), 173–181. https://doi.org/10.1089/whr.2020.0118

Sedrak1*, M. S., Soto-Perez-De-Celis2*, E., Nelson1, R. A., Liu1, J., Waring3, M. E., Lane4, D. S., Paskett5, E. D., Chlebowski6, R. T., 1City of Hope National Medical Center, & Sedrak, C. A. S. (n.d.). Online health information–seeking among older women with chronic illness: Analysis of the Women’s Health initiative. Journal of Medical Internet Research. https://www.jmir.org/2020/4/e15906