Why is asking for testing so important and so necessary?

February 4th, 2019

The Precision Medicine Connective is on a quest to help improve the diagnostic testing part of the patient journey. An important way to do this is by empowering patients to ask to be tested in ways that are relevant to them.  

There are many problems that need addressing to improve diagnostic testing. The issues range from sample collection and management to keeping up with the latest testing technologies in professional communities. The consequence of these issues is that poor and insufficient testing is being received by some patients. Diagnostic testing going wrong, is why we must ask in order to receive!  

The incentives for healthcare providers and laboratories to test properly and harmoniously throughout are too often either not there or are not good enough; this ultimately means that testing practices are inconsistent. The inconsistent practices have become bad news for patients; millions of patients worldwide do not get tested and a great number of those that are tested are not always properly tested.  

Poor incentives for diagnostics have resulted in practices with no universal standards for some testing, and no one to take ownership and responsibility to make sure testing is consistent and accurate.  

If every single patient asks to get tested for biomarkers, problems in diagnostic testing will have to be addressed. After all, who can ignore around twenty-five million voices?  

When we talk about cancer care, we can’t sidestep the need to discuss biomarker testing. Although there is not a drug for every single biomarker, there are some very important ones in different types of cancer and other general medical conditions, for which biomarker testing is crucial to receive targeted therapies. Targeted therapies are medicines specific to diseases with very specific characteristics. These new medicines have produced vastly improved outcomes for patients, not seen for a long time.  

As citizens and patients, we need to start realizing of the crucial role of diagnostic testing and precision medicine approaches for better treatment decisions, that ultimately result in better outcomes and better quality of life for many patients. We need to understand our condition beyond a primary diagnosis.  

There are many differences across regions of the world on how healthcare is delivered/provided. The details and information about all methodologies/technologies of diagnostics testing also varies considerably across conditions, however, in order to receive, we must ask!  

The diagnostic testing journey is not only complicated from the science and logistics side, it is also an overwhelming experience for people facing the prospect of serious conditions. By asking your healthcare provider to walk you through your diagnostic journey, it might help increase the chances of making better treatment decisions and gaining knowledge/access to better treatments. It might also help you to understand your choices for your own condition’s genetic makeup. This is called Precision Medicine, often also referred to as Personalized Medicine. Make sure you don’t miss out on receiving the best care available for you!  

Here are some questions to ask your physician and healthcare provider that might help you:   

First consultation questions*: 

  1. What types of tests are going to be carried out? What will the testing entail? What do you need from me? What samples will it use? Will testing have side-effects?  
  2. How long will testing take and when will I get the results?
  3. What will the results of the testing tell me? Will it result in a diagnosis? Will the testing give me more specific treatment options for my condition?
  4. Will I receive the most comprehensive testing possible given my symptoms/condition?  

*If there is reluctance to address these questions, please consider a second opinion.    

Subsequent consultation questions: 

  1. What do the results of the tests you’ve already performed tell you about my disease, my treatment options and my prognosis?
  2. What do these results mean? Could you tell me more about my specific disease and tumor(s)?
  3. Is my diagnosis definite? Are they any more tests or further input from specialists that could help with more definitive diagnosis or characterization of my disease?
  4. Are there any more tests that could be done to better figure out what treatment would be best for me? Is that extra testing available to me?
  5. Are there any personalized/precision medicine (PM) treatments for my disease that are available to me?
  6. Are there any PM treatments that would be good for me to try but that aren’t available to me? If so, are there any ways that I could access them e.g. via applying for funding or enrolling on a trial?
  7. Could the characteristics of my condition change over time? Do I need regular further/repeat testing to monitor my condition and to make sure that I am on the optimal treatment plan?
  8. What happens next? How often will I see you? How often will my treatment plan be reviewed?

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