Measuring health outcomes has always been about what healthcare professionals (HCPs) do to their patients and why. “How do you feel today?” Probably, you heard this question at least several times as a patient. After arriving at a health facility, most patients want to feel comfortable and feel their opinions count.
Today, with health services becoming market-driven, the patient’s perspective about their conditions plays a crucial part in delivering better medical services, creating more effective patient engagement strategies, increasing patient satisfaction, and winning the competition.
This tutorial will examine in detail why patient-reported outcomes are important for healthcare, how to collect them, and what role they play in the future of clinical care.
What is a Patient-Reported Outcome?
A patient-reported outcome (PRO) is an assessment of the status of a patient’s health condition that comes straight from a patient without third-party adjustments or interpretation. PROs can have different forms, such as surveys, diaries, and interviews.
Why PRO is Important for Healthcare
With patient-reported outcome measures, scientists can obtain the necessary data to complete clinical trials and produce better medication. As for providers, they receive an opportunity to use advanced treatment methods and build more trustful relationships with patients in the long run.
More Effective Drugs
Clinical trials were one of the primary reasons why PROs appeared in healthcare as a measurement instrument and became a standard in the late 20th century. Nowadays, PROs remain integral to clinical research and medical product development.
One patient-centered outcomes research that covers 15 years of clinical trials leading to genitourinary cancer drug approvals from 2007 to 2022 demonstrated that 27 out of 40 trial protocols included patient-reported outcomes. Interestingly, 85% of these 27 trials focused solely on PRO data.
Another study of 17,000 industry-sponsored clinical trials in oncology from 2013 to 2022 showed that 3,000 included PRO data. Despite the number of PRO-based trials standing around 16%, at least a third of phase three trials and nearly half of phase two trials included PROs.
In addition to assessing the effectiveness of clinical studies, PROs can be beneficial in evaluating medical services’ effectiveness.
More Detailed Patient Feedback
A patient-reported outcome measurement gives providers a deeper understanding of multiple factors that affect patients during different stages of interaction and can tell more about:
- how they feel about their symptoms
- how symptoms impact their health-related quality of life
- what side effects a treatment or drug have on patients
More detailed feedback from patients leads to more effective decisions made by HCPs.
Data-Directed Decision-Making
Patients are a valuable data source that can help providers generate unique insights and increase awareness of patients’ conditions, create personalized treatment plans, efficiently monitor treatment response, and beyond.
Also, patients want HCPs to be open and hear them. When providers consider the patients’ perspective in their decision-making, it improves patient adherence, increases satisfaction, and personalizes patient experience.
Enhanced Patient Experience
The industry is more consumer-oriented than ever. Patients, especially those with a more severe diagnosis, want to get the best treatment possible and feel the utmost dedication from medical personnel providing personalized service.
PROs are a perfect method for providers to discover everything they ever wanted about their patients, including their quality of life, interests, preferences, habits, health behaviors, and goals. Patients’ personal information enables providers to enhance experience and, in this way, stand out against competitors and facilitate the evolution of the industry.
How to Collect Patient-Reported Outcomes
The Construction of Surveys for Patients
Here are a few things to consider before constructing patient surveys:
1. Define Survey Goal
Ensure they align with your overall research question or clinical objectives.
2. Develop Survey Content
Use clear, simple language to create questions or items that address the defined goals. Consider including a mix of question types like multiple-choice and open-ended questions to capture a comprehensive range of patient experiences.
3. Incorporate Validated Measurement
When possible, include validated and reliable patient-reported outcomes measures developed specifically for the concept or outcome of interest.
4. Optimize Survey Length
Find the golden middle between the need for comprehensive data collection and the need to minimize respondent burden. Aim for a survey length that can be completed in a reasonable amount of time, typically no more than 15-20 minutes.
5. Organize and Format the Survey
Arrange survey items in a logical order and use clear formatting to enhance readability and user-friendliness. Consider grouping similar items into sections and using clear instructions and response options.
6. Pilot Test the Survey
Conduct a small-scale pilot study with a representative sample of the target audience to evaluate the survey’s clarity, relevance, and usability. Use feedback from pilot participants to refine and optimize the survey as needed.
The Distribution of Patient Surveys
When distributing surveys, a provider needs to:
1. Identify Distribution Channels
Determine the preferred channels for disseminating the survey to reach your target patient population. It may include facilities, patient portals, community organizations, social media platforms, email lists, or postal mail.
2. Use Personalization
Tailor dissemination strategies to the characteristics and preferences of your target audience’s each segment. Consider factors such as age, language, cultural background, health literacy, and access to health information technology when selecting dissemination channels and methods.
3. Provide Dedicated Support
Offer professional assistance to patients who may need help completing the survey, especially those with limited literacy or technological skills. Provide contact information or assistance resources for patients to reach out if they have questions or encounter difficulties.
4. Monitor Response Rates
Track the surveying process and adjust dissemination strategies as needed to increase participation. Send reminders, extend deadlines, or follow up with non-respondents to encourage survey completion.
5. Thank Participants
Show gratitude to patients who participate in your surveys by acknowledging their contribution and explaining how you will use their feedback to inform decision-making or improve services.
The Evaluation of Data from Patient Outcomes
Here are three simple steps to evaluate PROs:
1. Prepare Your Data
Ensure the PRO data you collected is complete, accurate, and free of errors or inconsistencies.
2. Conduct Different Types of Analysis
Summarize PRO results with descriptive, responsiveness, and other analytical techniques to understand the impact of your surveys and content.
3. Interpret Results
Consider the clinical and practical significance of the findings. Compare the results to existing benchmarks to provide a broader context for interpretation.
Patient-Reported Data Distribution
Here are five crucial steps in distributing PRO data:
1. Identify Key Stakeholders
Determine the individuals or groups who will benefit from the patient-reported data, such as patients, providers, researchers, policymakers, and payers.
2. Tailor Communication Strategies
Customize the presentation of findings to meet the needs and interests of different stakeholder groups. This may involve creating different reports, presentations, or publications for various audiences.
3. Choose Distribution Channels
Select appropriate channels for distributing the findings, such as journals, conferences, workshops, webinars, or social media platforms. Consider the preferred communication channels of each stakeholder group.
4. Share Findings
Distribute the findings through the chosen channels, highlighting key results, implications, and potential applications. Encourage dialogue and engagement with stakeholders to promote knowledge sharing and collaboration.
5. Facilitate Knowledge Transformation
Develop tools, resources, and guidelines to support the practical application of PRO data in clinical practice, policymaking, or research.
Patient-Reported Data Application
Here are four practices to effectively apply PRO data:
1. Improve Service Delivery
Apply PRO data to identify gaps in medical care, develop quality improvement initiatives, and enhance patient-centered care.
2. Improve Quality of Services
Utilize PRO data to enhance policies, optimize resource allocation, and empower the development of patient-centered programs or services.
3. Advance Research
Apply PRO data to inform research priorities, study design, and the development of new interventions or treatments.
4. Improve Patient Engagement
Use PRO data to engage patients in shared decision-making, self-management, and the co-creation of care solutions.
How to Improve Patient Engagement: Tips & Tricks
Patient engagement is necessary for quality care. When your organization uses an effective patient engagement strategy, it will know what exactly patients want and provide patients with the services they need faster and at a reduced cost. Here are a few useful recommendations that will help your organization enhance patient engagement in the digital age:
Design a Patient-Centered System: Today, your organization needs a single platform to engage with patients. Modern tools and features can provide a holistic view of each patient, streamline workflows between multiple care teams, and implement automation for better productivity.
Provide the Necessary Knowledge: Most patients want to know what to expect during their customer journeys. They should have access to materials and resources to learn more about their conditions, understand the pros and cons of their treatment options, and feel safer.
Collect Feedback from Each Patient: Patients have different perspectives, goals, revenues, and other characteristics, each affecting treatment in its own way. Collect feedback from each patient to have a range of perspectives and generate relevant insights about the level of patient engagement within your organization.
Future of Patient-Reported Outcomes in Healthcare
The data-driven approach is the future of care. According to one global survey of specialists who work in a healthcare-related industry and are aware of how their organizations use health information technology for research, diagnosis, and treatment decisions:
- 74% claim their organization has made more effort on its approach to data integration and interoperability;
- 72% claim their organization has made more effort on its data strategy approach;
- 94% understand that data-driven care offers new opportunities that can help patients and doctors benefit from personalized approaches.
In data-driven care, the role of PROs will only increase.
A Standard for the Entire Industry
Due to massive personalization and consumer-centricity, patient-reported outcomes will become a standard of care for most providers who will use it before and after intervention to meet patients’ expectations, improve engagement, and gain trust.
Overall Digitalization
With more providers focusing on exploring big data, artificial intelligence, and VR/AR technologies, PRO health care will undergo a digital renaissance.
Thanks to data-centered and data-driven approaches, the level of care will increase multiple times and become more convenient, customized, and connected. Providers will pay more attention to PRO data and analyze it more intensely to fill the gaps in treatment, improve health status monitoring, and generate actionable insights.
Final Thoughts
By integrating PRO for better medical outcomes, providers can tailor interventions to align closely with patient preferences, needs, and experiences. Patient-reported outcomes not only enhance the quality of life and medical services by offering a comprehensive understanding of treatment effectiveness and patient well-being, but also enable the co-creation of treatment plans through collaborative decision-making between patients and providers. Patient-reported outcomes measures stand as a cornerstone in modern care. This powerful tool will keep revolutionizing the delivery of medical services and approaches to patient engagement.
