Like just about every other industry, medicine has been transformed by the still evolving trend of greater education and empowerment of patients and caregivers. The “democratization” of information, making information available to everyone that was previously only the province of self-limited professionals, makes it now possible for the general public to buy airline tickets, books, music, even houses from new sources. In some ways, cancer is an ideal setting for patients and caregivers in which to seek online information – the stakes for doing better are extremely high, and there is usually time to gather information before intervening.
But gathering cancer information also has many challenges. First, there is far too much misinformation out there, perpetuated by people who profit by selling easy answers to hard problems, by spread from mass media or even investigators who gain by generating hype beyond what is justified, or even sharing by well-intended family and friends who have more enthusiasm than knowledgeable insight to press upon cancer patients.
Second, medical information is complex. Much of the information online is directed to medical professionals and financial analysts rather than to the lay public, and this content is typically filled with statistics and language that are often unfamiliar to those not well trained in science. Much of what is readily publicized also originates from sources that have a significant stake in the outcome, whether a pharmaceutical company that stands to profit handsomely from their message, investigators who raise their visibility and career prospects by overstating the significance of the results, or institutions that promote their work and treatment options in a way that can be marketing more than scientific news.
The consumers of this content are caught in the crossfire. During the upcoming #LCSM chat on 4/20, at 8 PM Eastern/5 PM Pacific, we will discuss how patients, caregivers, and health care professionals collect the information they use, whether there is sufficient content available at an accessible level, what format(s) are most valuable and sharable, the role of online patient communities and information shared from other patients vs. content created by medical professionals, and how the local oncologist and medical team respond to (self)-educated patients taking on a more active role in their management.
Taking all of this together, we will plan to tackle the following questions during the #LCSM chat 4/20:
T1 How much do people weigh the source for qualifications & potential conflicts of interest? Can you trust most online cancer info? #LCSM
T2 What are most valuable formats (e.g., video, text blogs, discussion forums) to pts/caregivers? Which sources are doing it best? #LCSM
T3 Do online groups offer unique value? What insights do ppl get from pts/caregivers that don’t come from content produced by HCPs? #LCSM
T4 How equipped are pts/caregivers to review med content like journal articles/abstracts? Any tools to increase med/science literacy? #LCSM
T5 Are local medical team members welcoming or dismissive of other sources? Are people still told “don’t look online”? #LCSM
Please join us for what should be a lively discussion. If you’re new to tweet chats, this primer will help.
#LCSM Chat Topic 4/6: Who Needs Research Anyway: How Have You Been Impacted by Lung Cancer Research?
Our topic for the next #LCSM Chat on Thursday, April 6th at 5 PM Pacific/ 8 PM Eastern is “Who Needs Research Anyway: How Have You Been Impacted by Lung Cancer Research?” The moderator for this chat is Dr. David Tom Cooke (@DavidCookeMD)
In its most recent budget outline, the Trump administration is looking to propose an 18% cut to the National Institute of Health’s (NIH; @NIH) $31.7 billion budget (#trumpbudget). In addition to this funding cut, the Trump administration proposes to 1) reorganize the current NIH institute structure and 2) fold the Agency for Healthcare Research and Quality (AHRQ; @AHRQNews) into the NIH, potentially diffusing it’s $334 million budget into other NIH institutes that perform similar quality investigative work. AHRQ funds research that focuses on patient safety and quality improvement. For example AHRQ has funded the development of lung cancer screening decision aides, and cancer specific patient-reported outcome measures to improve the care of cancer patients.
It is clear that such cuts to the NIH are unprecedented. During the sequestration of fiscal year 2013, the NIH budget was reduced by 5%, leading to 700 fewer research project awards and the funding rate for grant applications dropped to 16.7 percent, the lowest level in 20 years.
The Secretary of Health and Human Services (HHS) Dr. Tom Price has stated that the cuts to the NIH budget would be offset by reduced payments to university indirect costs. Indirect costs are what host research institutions charge to provide administrative support for research awards. They can be as high as 40% of awarded grants.
On Thursday, April 6th we hope to personalize the lung cancer research enterprise. For this Twitter conversation “Lung Cancer Research” is anything federally funded (or supported), experimental and hypothesize based. It can range from clinical trials testing a novel drug, to the development of a device or test, or an epidemiologic study (like lung cancer screening), or healthcare systems improvement evaluation. We want to hear from Lung Cancer patients and their families, as well as investigators. Of course all stakeholder voices are welcomed and expected.
We will use the following topic questions to lead the discussion:
T1 How have you or someone you know benefited from #lungcancer research? #LCSM
T2 What #lungcancer research has @NIH funded? How has this led to improvements in cancer outcomes or patient care? #LCSM
T3 What are indirect research costs, and why are they necessary? Do you think they are excessive? #LCSM
T4 What do you want to tell congress about @NIH #lungcancerfunding and/or #cancer research funding? #LCSM
Please join us for what should be a lively discussion. If you’re new to tweet chats, please check out this primer.
- AAAS. First Trump Budget Proposes Massive Cuts to Several Science Agencies.
https://www.aaas.org/news/first-trump-budget-proposes-massive-cuts-several-science-agencies. Accessed April 2, 2017.
- Science. Trump wants 2018 NIH cut to come from overhead payments.
http://www.sciencemag.org/news/2017/03/trump-wants-2018-nih-cut-come-overhead-payments. Accessed April 2, 2017.
- AHRQ. AHRQ Research. https://www.ahrq.gov/research/ahrq-research.html. Accessed April 2, 2017.
- AHRQ. Lung Cancer Screening Tools. http://effectivehealthcare.ahrq.gov/index.cfm/tools-and-resources/patient-decision-aids/lung-cancer-screening/. Accessed April 2, 2017.
Our topic for the next #LCSM Chat on Thursday, March 23 at 5 PM Pacific (8 PM Eastern) will be “What Is a High-Value Cancer Drug?”
With the price of new cancer drugs escalating, many are concerned about whether patients and the healthcare system can continue to access the most effective drugs. The 2016-2017 President’s Cancer Panel (PCP) topic is “Ensuring Patients’ Access to High-Value Cancer Drugs.” Andrew Schorr of Patient Power will be one of the patient advocates participating in the March 27, 2017 PCP meeting. This chat will help provide some inputs for Andrew, and give us a chance to chat about the topic in general.
You can also provide Andrew with information for the PCP by completing this survey: http://www.surveygizmo.com/s3/3370937/Cancer-Drug-Cost-Survey-2017
Moderator Deana Hendrickson (@LungCancerFaces) will use the following topic questions to lead our discussion:
- T1: How has paying for cancer drugs caused financial hardship for you or someone you know?
- T2: What factors should determine a drug’s value?
- T3: How would you define a “high-value cancer drug”? Is it by cost alone?
- T4: What “quality of life” factors should be captured in clinical trials?
- T5: How might drug companies do more to prove to you that they are working in your best interest?
Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here. Hope you’ll join us!