In recent years, healthcare has undergone a profound transformation, shifting its focus from traditional, clinician-centric models toward patient-centered care. This shift recognizes that healthcare decisions should not solely revolve around clinical outcomes but should also consider the patient’s values, preferences, and goals. At the heart of this transformation lies the concept of Patient Preference Information (PPI), a critical component that encompasses a wide range of factors extending beyond clinical outcomes.[1]
The factors usually considered under PPI include treatment modalities, potential side effects, the impact on a patient’s quality of life, and the collaborative process of shared decision-making with healthcare providers. Recognizing and effectively integrating patient preferences into the decision-making process is instrumental in empowering individuals to actively engage in their healthcare journey. This, in turn, enhances overall patient satisfaction and adherence to treatment plans, leading to significant improvements in treatment outcomes.[1]
PPI is related to, but is distinct from another familiar concept in patient-centric healthcare, namely the Patient-Reported Outcomes (PROs). On the one hand, PROs focus on assessing a patient’s subjective health status and quality of life after treatment administration; they are reported directly by the patient, and are thus crucial in evaluating the effectiveness of the administered treatment from the patient’s viewpoint. On the other hand, PPI delves into the patient’s preferences and values regarding various treatment options available at his/ her disposal. It aims to identify the attributes or characteristics of healthcare interventions that matter most to patients, ranging from route of administration, frequency of administration, place of treatment delivery, treatment convenience, cost, measurement of outcomes, and so on. To put things in context, a treatment plan aligned with a patient’s preferences (that is, following PPI) is more likely to be followed by patients diligently, leading to improved overall well-being and improved treatment outcomes, that is, PROs as well as physician-reported objective outcomes.[1-3]
For instance, patients with osteoporosis might have a distinct set of preferences revolving around attributes such as route of administration, cost, dosing frequency, and risk-benefit ratio. Many patients tend to favor treatments like 6-month subcutaneous injections or monthly oral tablets while actively avoiding gastrointestinal side effects. This wealth of preference data forms the foundation of PPI. In this context, PROs focus on evaluating treatment outcomes from a patient’s viewpoint, in terms of overall quality of life, symptom relief, pain-free days, treatment satisfaction, and medication adherence.[4]
PPIs can be measured as a part of traditional RCTs, or as a dedicated study with the sole objective of measuring PPIs; the latter study designs are often termed ‘PPI trials’. These PPI trials often involve open-ended interviews that allow patients to express their experiences and articulate the aspects of treatment that hold the most meaning for them.[1,5]
PPI estimation can be qualitative (what do you prefer?) or quantitative (how much do you prefer?). While qualitative methods for PPI estimation often involve ranking of options based on preferences, quantitative methods involve detailed interviews to quantify patient preferences in difficult situations using different evolving techniques. Some of these techniques are conjoint analysis (which allows patients to rank or rate hypothetical scenarios, deriving utility values and determining attribute importance), Best-Worst Scaling (that enables patients to identify attribute preferences by choosing between the best and worst aspects of treatment options), Time Trade-Off (TTO) and Standard Gamble techniques (that involve estimating trade-offs between treatment effectiveness and uncertainty), and so on. These quantitative approaches collectively enhance the evidence base for patient-centered healthcare decisions, resulting in more tailored and effective interventions.[1,5]
Collecting PPI data demands ethical considerations, informed consent, and strict privacy protection. Diverse patient populations must be included to accurately represent patient views. Advances in digital health technology, including wearables and health-centric apps, facilitate real-time PPI data collection. This data guides treatment decisions and addresses health disparities by considering underserved populations’ preferences, leading to culturally sensitive interventions.[5]
The applications of PPI collected through diverse methodologies can include facilitating treatment choices, improving clinical trial design, informing regulatory decisions, and enhancing shared decision-making. By valuing and integrating patient preferences, healthcare revolves around individual needs, fostering a patient-centric future.
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References
- Deborah A Marshall. Brief Overview of Patient Preference Information (PPI). FDA Committee. Power Point Presentation. 2021 Mar.
- Rincon-Gonzalez L, Selig WK, et al. Leveraging Patient Preference Information in Medical Device Clinical Trial Design. Therapeutic Innovation & Regulatory Science. 2023 Jan;57(1):152-9.
- Chachoua L, Dabbous M, François C, et al. Use of Patient Preference Information in Benefit-Risk Assessment, Health Technology Assessment, and Pricing and Reimbursement Decisions: A Systematic Literature Review of Attempts and Initiatives. Front Med (Lausanne). 2020 Oct 26;7:543046.
- Reaney M, Rodriguez AM. Patient Experience Information: Streamlining and Harmonizing the Collection of Patient Preference and Patient-Reported Outcomes Data. Pharmaceut Med. 2020 Oct;34(5):309-314.
- Medical Device Innovation Consortium. Medical device innovation consortium (MDIC) patient centered benefit-risk project report: a framework for incorporating information on patient preferences regarding benefit and risk into regulatory assessments of new medical technology. Med Dev Innov Consortium. 2015 Dec 27;4:e34.