Cancer Research and You: Your Experience Empowers Change

In this session, GRYT Health’s Chief Medical Officer, Dan Platt, MD, and Chief Research Officer, Darcy Flora, PhD, came together to talk about some of the most impactful projects we have done with our community. We dove into why it is important for you to not only learn about research, but participate as an advocate because your voice has the potential to change the future of cancer care.

As always, this program is meant to help educate and not replace any medical advice. If you have any medical questions, please talk to your healthcare team.

This article is a text summary of the program that took place in August 2021. Below you can find the hour-long program, if you would rather watch.

 

Key Takeaways:

    • Patient experience research is all about asking patients directly about their experiences.
    • GRYT Health focuses on patient-focused drug development research. We use the insights obtained through patient insights, patient reported outcome measures and satisfaction measures to influence pharmaceutical companies as they move into drug development and evaluation.
    • Patient experience research is young! There is still a lot we need to learn and adapt to. 
    • Patient experience research can take many forms, such as: surveys & questionnaires, in-depth interviews, group discussions and complex studies.
    • Patient experience research positively impacts patients, their caregivers, the industry and regulators. It’s a win for all involved! 
    • Get involved by being your own advocate and asking your medical team, medical institutions, and academic research centers. 

 

What is Patient Experience Research? 

It is research that asks patients directly about their experiences on a drug or in the healthcare system, instead of relying on answers from physicians. 

This type of research is vital to understanding more about individuals’ experiences with their treatment plan, their healthcare system and medical providers, and their day to day experiences. In the grand scheme this research is used to understand how satisfied patients are when it comes to living with their diseases and navigating the resources available to them. This research is an attempt at understanding what happens beyond the doctor’s office. 

Some examples of this type of research are:

  1. Patient-Focused Drug Development (PFDD): A systemic approach to help ensure that the full experience of patients is meaningfully captured and incorporated into drug development and evaluation.
  2. Patient Insights: Unique reflections and experiences shared by patients with medical and research professionals.
  3. Patient Reported Outcome Measures (PROMs): Measures administered at various points throughout treatment to monitor changes in patients’ quality of life, allowing providers to better understand disease and treatment impact. 
  4. Satisfaction Measures: Metrics used to measure the degree to which a patient’s needs are met by medical services and products.

GRYT Health focuses on improving patient-focused drug development through patient insights, patient reported outcome measures and satisfaction measures. We take the experiences shared by patients to influence how future clinical trials are set up and run. 

 

A Brief History of Patient Experience Research

Access to clinical trials started during the AIDS epidemic in 1988. After individuals who had AIDS advocated on their behalf, the FDA held meetings to discuss access to experimental treatments. 

In 1993 eight domains of patient experiences are established by the Picker Institute: 

  1. Respect for patient’s preference
  2. Coordination and integration of care
  3. Information and education
  4. Physical Comfort
  5. Emotional Support
  6. Involvement of family and friends
  7. Continuity and transition
  8. Access to care 

In 1995 the Consumer Assessment of Healthcare Providers and Systems (CAHPS) was created. This exists today and mostly focuses on individuals who receive care through government insurance such as Medicare/Medicaid.

In 1996 the first drug was approved based solely on quality-of-life measures. This was the first example of a patient’s quality-of-life playing an important role in the drug’s approval process.

In 2001 The Institute of Medicine defines Patient & Family Engagement as:

“Providing care that is responsive to, and respective of, an individual’s needs, preferences and values, and ensuring that the patient guides all clinical decisions.”

In 2007 The Beryl Institute released an official definition of the patient experience as:

“The sum of all interactions shaped by an organization’s culture that influence patient perceptions across a continuum of care.”

In 2012 Patient-Focused Drug Development initiative was enacted by the FDA. 

In 2013 the FDA began hosting PFDD Public Meetings in different disease areas. 

In 2016 the 21st Century Cures Act was enacted by the FDA.

Bonus date: In 2016 GRYT Health was founded!

 

What Does Patient Experience Research Look Like:

  • Surveys & Questionnaires
  • In-Depth Interviews
  • Group Discussion Sessions
  • Complex Studies

Each of the methods are used to gain new insight in the patient’s experience.

 

Why is Patient Experience Research Important:

Patient experience research has a positive impact for patients and their caregivers! Around 90% of adults are impacted by health literacy, this impacts an individual’s ability to make the best healthcare decision for themself based on their ability to find, process and understand existing medical information. Patient experience research looks to fill these gaps.

Patient experience research creates a more patient friendly care on every level; from drug development, to clinical trials, to defining the standard of care. It creates an in-depth understanding of the needs of individual patients, as well as the needs of larger patient populations. This research promotes the creation of products and services that are more effective, more patient focused and safer to use. Finally, this type of research identifies disparities in research and healthcare. 

In addition to its positive impact for patients and their caregivers, patient experience research also positively impacts industry and regulators! It prevents failures and wasted resources. It informs opportunities to improve or create new products and services. It leads to more successful clinical trials, which result in more successful treatments and diagnosis. Finally, patient experience research leads to a better understanding of applicants for new products and services. 

 

How to Get Involved in Patient Experience Research:

  • Learn to be your own advocate.
  • Participate when opportunities are presented.
  • Ask your medical teams, institutions, and academic research centers.
  • Join us at the GRYT Project

 

FAQs:

  1. What is the importance of including psychosocial impact of a condition or a clinical trial, and what does it mean from the 21st Century Cures Act and 2017 FDARA Requirements?
    1. Psychosocial medicine is an important addition to medicine and there are two ways it becomes involved: by educating physicians in medical school, and through patient reported outcomes and patient experience research.
      We need to make sure we are listening to the individuals who are affected by the system and this is exactly what patient experience research is about. 
  2. Does GRYT Health think PED should be required to be collected and considered in clinical trials? 
    1. Absolutely! Unfortunately less than 10% of clinical trials include patient reported outcome measures, so those clinical trials are not looking at a quality-of-life measure. GRYT Health is focused on creating new patient reported outcome measures and integrating the measures into clinical trials. 
  3. Does this apply to post-treatment and creating a survivorship plan?
    1. Yes. While this is typically used during clinical trials, it is important to know the experience of individuals across the spectrum: newly diagnosed, 5 years post-treatment, 20 years post-treatment, etc. Looking and understanding the long-term impacts are only discovered by following patients throughout their life. 
  4. How does this work relate to the research advocate position now found in many academic medical centers?
    1. The research advocate position found in academic medical centers focus on patient experience for the purpose of grant applications. It is another aspect of patient research experience and is seen on the government side of our pharmaceutical system. GRYT Health focuses more on the private side. It is important to integrate both sides of our healthcare system in order to see systemic changes. 

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Thanks for reading! What should you do next?

  • Want to connect with others? Our GRYT Health platform is a safe place for real conversations where you can connect with others who are going through what you are. Bonus! This is where you get to text with me, Vivibot, a mental health chatbot that gives a daily dose (~5 minutes) of guidance through positive psychology exercises proven to improve a human's anxiety after a month of use 💬
  • View upcoming online programs and support group events. Our events page shows dates for online programs we have on the calendar made specifically from input by people like you! We <3 our community and listen to bring programs to life that they're asking for 💞
  • Read cancer patient stories. Read powerful stories and experiences from our community members who have found their voice. Advocacy starts at finding and using your voice 📢