Praxis’ presentation at this year’s SCOPE Summit aimed to make the patient journey personal for those in attendance. “Navigating clinical research from the perspective of the patient: A journey in humility” was led as an interactive session by patient advisor T.J. Sharpe and our very own Bob Loll of Praxis.
After hearing attendees’ great insights, we’ve chosen to compile many of their comments here so as to recognize this interactive input in addition to sharing our overall SCOPE 2018 takeaways.
The premise of the presentation was this: successful clinical research is completely dependent upon the efforts of volunteer patients who must understand their diagnosis, acquaint themselves with available trial/treatment options, comprehend the medical impact of their decisions, and choose a therapy – almost always without a background in healthcare.
Live at the conference, T.J. and Bob walked the patient journey together with the audience, from the initial diagnosis of a potentially life-threatening disease, through to treatment selection and clinical trial participation. Following are some of the comments, questions, and discussions that this journey elicited.
You’ve just been diagnosed with Stage III Melanoma. Now what?
T.J. and Bob challenged the audience to think about what they would do and ask in the moments and days immediately following a serious medical diagnosis. What would you do?
- Search Google for information
- Talk to my primary care physician
- Wonder, “What are my chances?”
- Call a friend
- I wouldn’t hear anything other than what the physician had said – I’d be unable to do anything for a while (T.J. related to this as a kind of “paralysis”)
- Look for the disease on Facebook
- I’d want to know what quality of life I could expect
You find out a clinical trial is an option. What impacts your decision?
Audience participants pointed out that a clinical trial option needs to be communicated at the right time. The average patient doesn’t even know what a clinical trial is. T.J. remarked that for many people in the industry, the concept of a clinical trial is “abstract” and focused on numbers, instead of on patients, their families, and their children. What would impact your decision to participate in a trial?
- The physician that spoke to me about it and how he/she presented it
- How much travel is involved
- The quality of life difference between trial options
- What’s the burden on the patient?
- How fast will I get results?
- What if I get a placebo?
- Is there an open label extension? Can I get the drug after the study if it’s efficacious, even if I received the placebo?
- Most patients care less about compensation than quality of life – it’s about the cost in time/money to the patient vs. “getting paid”
- We should consider the question to be, “What is my next treatment option?” not, “Which clinical trial?”
- Give healthcare professionals the tools to make treatment decisions
- Primary care physicians play a critical role from initial diagnosis to referral to a specialist – we need to consider how to better inform PCPs from medical school on
- “A patient doesn’t get cancer; a family gets cancer”
Judging from the engagement of the attendees, we could have continued this conversation much longer than the lunch allowed. T.J. and Bob concluded the presentation with an acknowledgement of the contributions of patients and dedicated professionals in clinical research, thanking these “medical heroes,” including co-presenter T.J. Sharpe, himself.
Ongoing dialogue concerning the patient journey and experience is an important conversation to have, and one that we at Praxis want to make sure is continued. Please contact us if you would like to see a copy of the presentation deck or if you have any questions or comments to continue the conversation.