Patient Insights for Improving Patient Outcomes

Patient insights refer to the data, information, and feedback collected from patients to understand their experiences and perspectives. Patient insights help researchers gain a deeper understanding of how diseases affect patients' lives, and also of the effectiveness of policies, treatments, or preventative measures.

These insights also enable researchers and healthcare providers and policy-makers to make decisions that are more informed, patient-centered, and meaningful for patients and their healthcare outcomes.

Why are patient insights important in clinical research?

Patient insights provide a first-hand glimpse into the effectiveness of treatment regimens, along with side effects and other factors of the patient’s direct experience. Such insights provide researchers with a more thorough understanding of how patients interact with treatments throughout their course of care, allowing them to make adjustments to therapies, suggest changes to healthcare policy, identify unmet medical needs, and more.

Patient insights also provide an essential layer of data to inform and guide 

. By understanding what patients experience during the course of their treatment as part of a clinical study - ranging from side effects to emotional ups and downs - researchers can better design future studies that better fit individual needs and preferences, leading to improved patient satisfaction and even improved outcomes.

The primary goal of gathering patient insights is to understand the individual experience from the perspective of those receiving care; this requires collecting data that reflects the lifestyle, values, beliefs, goals, attitudes, behaviors, self-perception, and/or emotional state of patients or trial participants.

With a better understanding of what matters most to patients when it comes to their treatments or health condition – for example, preferences for certain 

 or avoidance of particular side effects – clinical trials can be designed with improved patient satisfaction in mind by incorporating elements such as tailored interventions or 

Patient-reported outcome (PRO; and electronic patient-reported outcome, or 

) tools allow patients to self-report on different aspects related to their condition or treatment, such as symptoms, function, or pain levels—providing valuable insight for sponsors and investigators into factors that may not be reflected in standardized scales or typical outcome assessments. This information can then also be used to develop new and better tools for measuring health outcomes by incorporating feedback from patients’ experiences.

Insights gleaned from patients can help identify gaps in knowledge or 

, or even areas of improvement in clinical trial experiences. This information can be used to develop informative resources for health professionals to help them address frustrations patients express with their healthcare journeys, to create educational material for patients, or even to create support groups for patients so they have access to additional resources outside traditional medical settings.

Some trial sponsors may offer patient support programs during and after clinical trials in order to provide additional comfort for participants. Such initiatives could include counseling services or other forms of emotional care from healthcare professionals along each step of the process, and patient insights are the perfect data source for informing the design of such support programs.

There are several ways in which researchers can collect information about participant experiences:

Interviews allow researchers to ask detailed questions about how participants feel about their treatment regimen while also providing a platform for open dialogue. This gives them an opportunity to explore other areas that may or may not be directly connected to their illness/treatment, such as quality of life, concerns, social factors, etc. Interviews should be at least semi-structured to facilitate data analysis, and thus it is important to develop a defined research plan before beginning (see “Best practices” section below).

Surveys provide another way for researchers to gain insight into how participants are feeling about their condition, responding to treatments, managing trial protocols, etc. As opposed to interviews, surveys more easily allow anonymity, which gives respondents freedom to express opinions truthfully, without fear of being judged or treated differently.

Focus groups involve having several individuals who share similar characteristics (i.e., same diagnosis or similar age range, gender, ethnicity, etc.) discuss topics to identify what matters most to that patient population. Such insights can be more structured due to representing a larger group as an average, but this requires some planning to guide the focus group in a methodical way. The interactive nature of focus groups may also elicit distinct insights arising from the way in which patients reflect ideas and perspectives off one another and generate new conceptual connections.

Establishing a patient insights program could be a highly beneficial strategy for clinical research sponsors, particularly those conducting multiple studies and with an interest in improving. Having a sound understanding of patient needs and preferences can allow sponsors to make decisions that improve recruitment efforts, increase patient engagement, and even enhance trial quality overall. Some specific benefits of collecting and utilizing patient insights include:

1. Patient centricity: Enhanced understanding of patient needs

With a comprehensive view of patients’ needs and desires, sponsors can adjust existing strategies and make improvements for subsequent trials to ensure that patients have the best experience possible. This concept is known as 

 trial design, and it allows sponsors to design more appealing and manageable trials, and hopefully to ultimately improve overall outcomes in the long run.

2. Improved patient satisfaction and engagement

Another main goal of implementing a patient insights program is to increase the overall satisfaction and engagement of participants throughout the clinical trial process. 

 and can influence treatment adherence and the quality of results. By gathering data on how patients feel about certain treatments or processes, sponsors can make adjustments accordingly to ensure that participants feel supported throughout their journey.

3. Better-quality healthcare services and informed decision-making

Through patient insights, sponsors can gain insight into what is most important to patients when it comes to their healthcare journeys. This knowledge can then be used to inform decisions made during clinical research design, such as which medications or treatments should be tested first or which processes should be streamlined for greater efficiency. It can also be used to inform policy-making at a broader level, which can lead to improvements in healthcare services in general. Ultimately, gaining this type of knowledge has the potential to lead to improved quality of care for everyone. 

Challenges in collecting and utilizing patient insights

While there are many benefits associated with having a comprehensive patient insight program in place, there are also several challenges involved, both in terms of collecting the insights and in making sense of them to generate actionable conclusions.

 for research studies is one of the main challenges for sites and sponsors. While recruiting respondents for a simple survey could be easier, it is still necessary to identify a target population that will provide appropriate and relevant insights. Thus, if patient insights are gleaned outside of a clinical trial or specific therapeutic setting, aspects of study design such as sample size identification and definition of the 

 should be applied in order to maintain the scientific validity of the insights gained from the patients involved.

Language and cultural differences can present another challenge, especially within multicultural communities and when the patient population involved is highly diverse. In order for insights to be clear and useful, it is important for participants to be able to express themselves clearly and comfortably. This may require involving translators, interpreters, or accessibility tools, depending on the patients and the condition being studied. Since patient insights represent more of a collaborative effort than classical research studies (where investigators usually recorded data themselves), this factor should not be overlooked.

Patient insights may be relatively unstructured data as compared to health outcomes typically measured in clinical research settings. Some researchers will be used to working with similar data sources, such as ePRO, but patient insights still present the possibility of being endlessly variable. It is important to consider this during the design of the methodology to be used for collecting patient insights, in order to provide as much structure as possible to facilitate later analysis of the data. If the data is too unstructured, it could be nearly impossible to gather actionable insights. This could involve the use of field constraints, scales and rankings rather than open-ended questions, or limiting the scope of each session/survey/interview to focus more narrowly on a few topics at most.

3 Best practices for gathering patient insights

Now that we’ve established the theoretical foundation, here we present a practical guideline consisting of three best practices for gathering patient insights:

Before collecting any insights from patients, it’s important to have a well-defined plan in place. This plan should consider the type of data that you want to collect (including how to constrain it), how you plan to collect it, and with what frequency. It should also define who will be responsible for collecting it, for what purposes the data will be used, and should explicitly consider data confidentiality and privacy regulations (see point #3).

2. Recruit a diverse sample and use different methods of data collection

When possible, try to involve a diverse sample to collect a broader range of insights, as this will typically lead to more generalizable results. However, the sample should also represent the population you’re targeting, and in some cases the best sample might be quite homogeneous. Thus, this depends on the specific condition involved, the patient demographic available, the insights you are looking to obtain, and the eventual purposes of those insights.

Relatedly, combining different methods of data collection - such as interviews, focus groups, surveys, or even experimenting with wearable devices - can provide deeper insights, although it will also generally make the analysis more complex. Higher variability in the data sources (both in terms of data types and interpatient variability) is more likely to produce results that are both generalizable and insightful.

3. Ensure confidentiality and privacy of patient data

Patient privacy must always be respected when collecting patient insights. Make sure to explain how their private information will be collected, stored, secured, and protected before collecting any data. Maintain internal documentation of data collection procedures and keep patients records secure at all times after they are collected. Applicable regulations include GCP and either HIPAA (US) or GDPR and CTR (EU) - see our article on 

Patient insights can help inform clinical research in meaningful ways, with benefits for patients, sponsors, sites, and the broader population. By following the three best practices we suggested in this article – developing a clear plan, recruiting a diverse sample and combining different methods of data collection, and respecting data privacy – sponsors can gain a thorough understanding of patient experiences and turn them into actionable insights for improving patient engagement and satisfaction, guiding trial design, and improving data quality.

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