The Domains of Patient Participation in Depth
THE INTENT OF HEOR IS TO IMPROVE OUTCOMES
At its core, HEOR is a purpose- and mission-driven activity. All research and communications should always be conducted with a single aim in mind: to improve patient outcomes. Ultimately, this means that research projects should be created on the basis of a full and complete understanding of the needs of patient communities. The goal should be to translate this understanding into results that will have an impact on the problems that matter most to patients.
By better understanding patients’ lived experience, stakeholders are empowered to be empathic. They are also better able to design research protocols that take participants’ needs and preferences seriously. This enables them to demonstrate
outcomes that are better aligned with patients’ goals for improving their quality of life.
Sophie Tsai, MD, has noticed that adopting a patient-centric approach in healthcare research not only supports empathy but also enhances the quality of the data that is collected.
“For me, patient centricity comes down to ‘caring’,” she says. “Caring goes both ways. It is a partnership between patients who ‘care’ about their own health and other stakeholders in the healthcare system who ‘care’ about the patients. Patients who ‘care’ are empowered self-advocates, have a certain degree of health literacy, and/or are actively seeking information and asking questions.”
THE INTENT OF HEOR IS TO IMPROVE OUTCOMES
At its core, HEOR is a purpose- and mission-driven activity. All research and communications should always be conducted with a single aim in mind: to improve patient outcomes. Ultimately, this means that research projects should be created on the basis of a full and complete understanding of the needs of patient communities. The goal should be to translate this understanding into results that will have an impact on the problems that matter most to patients.
By better understanding patients’ lived experience, stakeholders are empowered to be empathic. They are also better able to design research protocols that take participants’ needs and preferences seriously. This enables them to demonstrate outcomes that are better aligned with patients’ goals for improving their quality of life.
Sophie Tsai, MD, has noticed that adopting a patient-centric approach in healthcare research not only supports empathy but also enhances the quality of the data that is collected.
“For me, patient centricity comes down to ‘caring’,” she says. “Caring goes both ways. It is a partnership between patients who ‘care’ about their own health and other stakeholders in the healthcare system who ‘care’ about the patients. Patients who ‘care’ are empowered self-advocates, have a certain degree of health literacy, and/or are actively seeking information and asking questions.”
"When we see our research, we need to see the patient: their face, their journey, the world they inhabit. We should immerse ourselves in the patient perspective."
JASMINE MALONE, BSC HEAD OF PATIENT CONTENT, OPEN HEALTH
“Once the patients have a voice, they will need a stage and an amplifier — that could be regulators, researchers, clinicians, or other stakeholders who recognize the value of patient voice and then actively seek out opportunities to engage the patients. To me as a researcher, engaging patients and patient communities in our studies makes total sense. Not only does it make my work so much more enjoyable, but it can also help generate meaningful research questions and lead to higher recruitment rates. Additionally, engaged research participants, such as patients or caregivers who ‘care’ and invest in the process, will typically elevate the quality of the data generated.”
Larry Radican, PhD, head of HEOR at OPEN Health Communications, concurs. “HEOR has two primary functions,” he says. “Conducting research to help understand unmet needs and treatment gaps and identifying the value of treatments. Everything that we do — collecting data, communicating, developing the message — has to be for the patient.
We have to keep the patient at the very front of our minds. When we see our research, we need to see the patient: their face, their journey, the world they inhabit. We should immerse ourselves in the patient perspective.”
As a former academic editor and journalist who now serves as head of patient content at OPEN Health, Jasmine Malone, BSc, is accustomed to putting herself in others’ shoes. “For healthcare practitioners (HCPs) and agency stakeholders, patient centricity means remembering that one day you might also be a patient, so you want to ensure that any communications targeted towards or involving the patient in any way are put together in a way that you wouldn’t mind participating in or receiving yourself,” she says. “You would want that communication to be done in a thoughtful way, which is understanding of both your circumstances and your emotions during that time — as well as your specific informational needs.”
“Once the patients have a voice, they will need a stage and an amplifier — that could be regulators, researchers, clinicians, or other stakeholders who recognize the value of patient voice and then actively seek out opportunities to engage the patients. To me as a researcher, engaging patients and patient communities in our studies makes total sense. Not only does it make my work so much more enjoyable, but it can also help generate meaningful research questions and lead to higher recruitment rates. Additionally, engaged research participants, such as patients or caregivers who ‘care’ and invest in the process, will typically elevate the quality of the data generated.”
Larry Radican, PhD, head of HEOR at OPEN Health Communications, concurs. “HEOR has two primary functions,” he says. “Conducting research to help understand unmet needs and treatment gaps and identifying the value of treatments. Everything that we do — collecting data, communicating, developing the message — has to be for the patient. We have to keep the patient at the very front of our minds. When we see our research, we need to see the patient: their face, their journey, the world they inhabit. We should immerse ourselves in the patient perspective.”
As a former academic editor and journalist who now serves as head of patient content at OPEN Health, Jasmine Malone, BSc, is accustomed to putting herself in others’ shoes. “For healthcare practitioners (HCPs) and agency stakeholders, patient centricity means remembering that one day you might also be a patient, so you want to ensure that any communications targeted towards or involving the patient in any way are put together in a way that you wouldn’t mind participating in or receiving yourself,” she says. “You would want that communication to be done in a thoughtful way, which is understanding of both your circumstances and your emotions during that time — as well as your specific informational needs.”