Participant-Centric Approaches in Research
Stacey has 27 years of experience in the medical field starting out with an extended background in Cardiology/ICU. Stacey has worked in Oncology, Ambulatory Infusion, Pain Management, PACU, Orthopedics/Spine, Wellness, Obesity Management, and Integrative Medicine. She is a preceptor and mentor to new Nurses, Nursing students, and Medical Assistants. Discover her thoughts on patient-centric approaches in clinical research.
Treating patients as a whole
When caring for patients, they should be treated as a whole, and not just a disease or illness. Health care and treatments are not always a one size fits all approach. A patient background beyond their medical history (fears, hopes, career, family, financial responsibilities, religions, beliefs, etc.) should always be taken into consideration by clinicians.
Involving patients in their care and presenting them with treatment options is shown to build trust, rapport, understanding, and genuine empathy between the clinician and patient. It ensures the patient feels listened to and understood by their care team.
If only the clinicians are directing the entire care of the patient, not providing options, and not having discussions with patients to get to know them better, it is likely the patient will be less compliant with following the recommendations provided to them. It may also discourage the patient from following up with the clinician regarding their health issues which in turn can lead to further complications.
All these scenarios can lead to poor health outcomes especially with chronic disease management and decrease in quality of life.
Stacey emphasized on this point: “We should realize that the world is diverse and that we all come from different backgrounds with good and bad experiences in our lifetimes. With that said, it should be recognized that when patients come to us for care, they bring with them an array of circumstances, sometimes complex, that affect their health in many ways. Their circumstances may be contributing or exacerbating their conditions or both.
"As clinicians, we cannot view this person sitting in front of us as a disease or a problem that needs to be solved. The person sitting in front of us may have worsening of their chronic condition and as clinicians, we need to consider why this is occurring. We need to consider their living conditions, financial status, personal relationships, their mental health status. Perhaps they just lost their job recently and no longer have insurance or income to pay for their medications and therefore, they ran out of medication which in turn has caused their condition to worsen”.
Patient-centric approaches in clinical trials
The above considerations have many implications in clinical trials and patient involvement. When trials focus on patient needs and preferences, it translates to improved interest, enrollment, compliance, and retained participation from the clinical trial volunteers. Participant engagement is essential to advance in preventative medicine and disease treatment research.
In a research study conducted by Wahlstrom-Edwards & Hess (2019), they questioned how patient perceived clinical trials. It was discovered that 90% of patients found discussing the trial in detail with the nurses, providers, and clinical trial coordinators made them feel they were a partner in the research and not just a number. Sadly, only one third of the same people who reported this to be important to them, have ever spoken to their provider about research.
56% of people surveyed reported they would like for their providers to discuss research with them before they decide to participate while 66% of those surveyed would like to have clearer information of the logistics such as financial needs, travel or time constraints, just to mention some.
Clinical trial participation can be slowed down due to this contributing factor, especially in the lower socio-economic populations who fear that financially they cannot afford to participate in trials. Which only confirms the need to openly discuss the obstacles or worries that they may face if they were to participate in clinical trials.
A patient-centric approach is integrated in our trials thanks to health professionals such as Stacey. She highlights: In general, my personal approach to patient care and assessment has always been to view the person as a whole. Build a relationship of trust and understanding between both of you and encourage honesty with no judgement. By doing that you will have better compliance, recommendations, and follow up.
I always tell my patients to stop me during our conversations if they don’t understand something, and also to contact me for any questions or concerns they may have if something does not make sense once they leave the clinic. I encourage questions while they are in front of me so I can try to make sure the plan is agreed upon and understood. And above all else, I always tell my patients that there is no one size fits all in medicine. And that sometimes, it may take a few attempts to get the right regimen for them and that patience is very important in their care.
Stacey is a Board-Certified Family Nurse Practitioner who graduated with Distinct Honors from Chamberlain College of Nursing for her Bachelors of Science in Nursing and later her Masters of Science in Nursing-Family Nurse Practitioner Degrees holding a GPA of 4.0 for five years straight. She is a member of the prestigious Sigma Theta Tau International Nursing Honor Society. She has 27 years of experience in the medical field starting out with an extended background in Cardiology/ICU. Stacey has worked in Oncology, Ambulatory Infusion, Pain Management, PACU, Orthopedics/Spine, Wellness, Obesity Management, and Integrative Medicine. She is a preceptor and mentor to new Nurses, Nursing students, and Medical Assistants. She was the department Provider for over 70 Fire Departments and Police Departments in Illinois conducting their annual physicals, sick visits, work injury visits, and pre-employment physicals.
When not working on clinical trials with Atlantia, Stacey see’s patients via telehealth and is currently working on her Doctorate of Nursing Practice Degree. She was published for her work with patients receiving infusions for the treatment of Thyroid Eye Disease (TED) and has recently been asked to present her current research on improving Obesity Management at the Annual National Omnicron Delta Education Conference. However, her greatest achievements are being married to her husband, raising her two wonderful grown children, and her two dogs.
Wahlstrom-Edwards, L. & Hess, AM. (2019). The patient perspective on clinical trials. Applied Clinical Trials, 28(3). https://www.appliedclinicaltrialsonline.com/view/patient-perspective-clinical-trials