Prostate cancer advocates need to understand the concepts of Evidence Based Medicine so that they can be part of the dialog as the cancer treatment system evolves.
The web course to train patient advocates on Evidence Based Medicine was developed by advocate, Musa Mayer with epidemiologist Kay Dickersin (Director, US Cochrane Center) is open for registration. While they designed the course for advocates, the course content may be helpful for anyone working in healthcare who has a need to understand research design, bias, levels of evidence, statistics and risk, critical appraisal of the medical literature, and other course content.
The “running time” for the six modules in the course is about six hours, but the course may take somewhat longer, as it is broken into 10-20 minute segments, meant to be taken over several weeks. The course is free, but you will be ask you to fill out a registration form, and help improve the course by evaluating the various modules.
From the website:
Our goals in this course are to provide consumer advocates with the tools they need to:
* Successfully navigate the world of medical information,
* Critically appraise research studies,
* Influence the creation of responsible public policy in healthcare, and
* Help the people they serve to make healthcare choices based on the best available evidence.
In these six modules, we will illustrate key concepts with compelling real-world examples, covering the following topics and issues:
* Module 1. INTRO: What is evidence-based healthcare and why is it important?
* Module 2. ASK: The importance of research questions in evidence based healthcare.
* Module 3. ALIGN: Research design, bias and levels of evidence.
* Module 4. ACQUIRE: Searching for healthcare information. Assessing harms and benefits.
* Module 5. APPRAISE: Behind the numbers: Understanding healthcare statistics. Science, speed and the search for best evidence.
* Module 6: APPLY: Critical appraisal and making better decisions for evidence-based healthcare, Determining causality.
To read more about the course, and to register, click here.
I am a physician, a medical scientist, and an expert in computerized medicine. I am also a prostate cancer survivor. I as much as anyone was equipped to “navigate” the maize of information on prostate cancer and it was difficult. I find the STAR program to be very self serving to the establishment stakeholders in the research community. Deputizing patients with skills in biotatistics and epidemiology makes about as much sense as deputizing a crime victim in a lawless neighborhood and giving them a gun after a crash course in how to use it. The main challenge of “Evidence Based Medicine” is that there is no evidence. Studies are fragmented, use cherry picked study subjects that are non generalizeable and do not incentize physicians to standardize data collection across all patient care encounters so that enough aggregable data exists from which to draw inferences. The discipline of evidence based medicine is “silly glue” or putty for cracks in how health care is studied in this country. Dont try to legitimize it to vulnerable patients that it “really” has to do with evidence. The Cochrane ratings are middle of the road and ambiguous ordinal ratings that protect the raters and offer patients nothing. I am sorry to hear that epidemiologists and biostatiticians have nothing else better to do but represent their evil ways as useful to a population in need. We don’t need more putty in the broken Chevy.
Here is the positive side of my message. Do a “needs analysis” for prostate cancer patients. Is it that there are no treatments? Are there post treatment needs. What do patients need the most? Start from there.
Alex Ruggieri, MD MSH
As I stumble along as an advocate I frequently hear angry comments similar to yours. I represent you and advocate for you. I work with the FDA, NCI, etc and must maintain a relationship with them but the primary person I represent are the men like this you who are dealing daily with prostate cancer and the lack of research that we have on the disease. I will take your suggestions and move forward with them as best I can.
Kathy Meade, VPCC and NASPCC
Keep up the great work and try to clone a half-dozen more of you.
You are the greatest.
Cloning me is not what we need. What we need is more people getting involved, learning about the system with its problems, and then taking action to attempt to make changes. It isn’t easy but as long as we don’t give up, things will get better.
Thank you Phil for your nice words.