ISPOR 2023: 4 key RWE themes we saw at this year’s conference
By
Evelyn Pyper
May 25, 2023 • 5 min read
The energy at this year’s ISPOR Annual conference was palpable. As over 4000 professionals from across industry, government, and academia descended on Boston, it was clear that ISPOR — the International Society for Pharmacoeconomics and Outcomes Research — is the preeminent “meeting of the minds” for health economics and outcomes research (HEOR) globally.
At ISPOR 2023, the PicnicHealth team showed up in a big way. From meeting in person with our current partners, to connecting with new potential collaborators, the event was key for our Partnerships team. The PicnicHealth booth was a high-traffic location, where attendees were able to stop by for a meet-and-greet and learn more about our real-world data (RWD)-driven offerings. Our Research team was also very active at ISPOR, with three poster presentations showcasing real-world evidence from PicnicHealth cohorts spanning three disease areas.
Disease Modifying Therapy (DMT) Utilization and Health Care Resource Utilization (HCRU) Among Adults with Multiple Sclerosis (MS) in a United States-Based Real-World Cohort View Poster
Utilization of Diagnostic Testing in Alzheimer’s Patients View Poster
Exploring the Path to Diagnosis for Patients with Myasthenia Gravis Using Real-World Data View Poster
Whether or not you had the opportunity to attend the three action-packed days of ISPOR this year, we’ve got you covered with a summary of 4 major themes that emerged:
1. RWE: From ISPOR Theme to Common Thread
It was not too long ago that the concept of real world evidence (RWE) began to buzz throughout major life science meetings and forums. This ‘buzz’ soon turned into targeted RWE sessions within conference programs unpacking terminology and exploring the opportunities and challenges of using RWD. With a growing number and type of RWD sources and increasing recognition from decision-makers of the value of this evidence for studying new therapies, RWE further evolved into a mainstay topic and often a central theme or track at events like ISPOR. The conversations evolved from ‘what is RWE?’ and ‘how can we use it?’ to a richer dialogue on methods and applications. At ISPOR 2023, it was exciting to see how RWE has again graduated from a recurring theme to a common thread across effectively all outcomes research topics. Whether we’re talking about health policy, analytic approaches, digital technology or even clinical trials, we can be certain that RWE will be part of the conversation.
2. Transparency: Seeing the Data Clearly
RWE’s embedded role within the HEOR community was further evidenced by the ISPOR RWE Summit, which took place the Sunday before the main ISPOR conference. This event was dedicated to examining key issues surrounding RWE in regulatory decisions and health technology assessment, and did so with a scientifically rigorous program centered around data quality. The topic that surfaced most at the RWE Summit and throughout the three days of main programming that followed, was transparency. The message from stakeholders was clear: more transparency on data collection and curation is needed for decision-making. Beyond being crucial to inform decisions on the acceptance of and access to a novel therapy, transparent reporting also supports reproducibility of results. This call to action certainly applies to data generators/providers, but what about HEOR professionals and other users of RWD within the life sciences industry? In short, ask the right question. If the RWD provider you’re considering cannot explain clearly and comprehensively how their data is retrieved and processed, this should raise a flag that signals further inquiry.
3. Language Matters: But Concepts are Changing
Terminology has always been critical within the ISPOR community. As a hub for global HEOR experts who work across different markets, therapeutic areas, and stages of drug development, the ISPOR conference sessions underscored the importance of using consistent terms and a common language when discussing these complex topics. In the early days of RWE, conversations focused on reinforcing RWD as the antithesis of RCT data; even today, the easiest and most common way to define RWD is “data collected outside of the traditional controlled trials”. But as clinical trials have evolved to encompass a broad spectrum of explanatory and pragmatic designs, thought leaders at ISPOR considered the notion that these traditional juxtapositions (e.g. RWE vs. RCT; Interventional vs. non-interventional study) may no longer serve us. To drive this conversation forward, PicnicHealth recently convened thought leaders in clinical trial innovation for a webinar, “Real-World Data By Design — Incorporating Different Data Types into Clinical Trials” that can be accessed here.
4. AI : Artificial Intelligence, Real Applications
Finally, a central theme at ISPOR this year was the ability of artificial intelligence (AI) and machine learning (ML) to transform the way we generate evidence. Sessions covered a wide range of AI applications for health economics and market access, from predicting treatment outcomes, to assessing the cost-efficiency of novel therapies, to carrying out comparative effectiveness research. Moreover, the conference highlighted how applying ML, and specifically natural language processing (NLP) to electronic health records (EHRs) can uncover important insights on the patient journey, with more efficiency and accuracy than ever before. As a health technology company with a core capability in human-curated, ML-driven data abstraction, the PicnicHealth team is ecstatic to see the growing recognition of advanced analytics – not as a replacement for clinical contextualization, but as a critical tool for delivering deep clinical insights at scale.
ISPOR 2023 may have wrapped, but we’re keeping the conversation going. Didn’t get a chance to connect with us? Want to learn more about the data our team presented? Contact us today!
1. Provider assessments
PicnicHealth’s providers can schedule virtual visits with study participants to conduct assessments required by the study protocol. Using clinical expertise, these assessments help evaluate participants' symptoms, overall health, and functional ability.
2. Diagnostics
The PicnicHealth care team can order specific diagnostic tests, such as labs or imaging, if they weren't part of the patient's routine care. This ensures that sponsors have all the necessary data to address their unique research questions.
3. Safety and adverse event reporting
PicnicHealth’s clinical team can provide support to ensure appropriate safety reporting. This includes monitoring for safety events to support safety adjudication.
4. Primary Investigator (PI) oversight
The PI of the PicnicHealth Virtual Site provides clinical oversight to ensure appropriate study conduct, including assessing whether the study is following study protocol, meeting compliance with regulatory standards and good clinical practice guidelines, collecting data accurately, and maintaining documentation and producing progress reports as required.
25,966
patients onboarded to platform
1,427,368
medical visits processed
56,861
facilities provided medical records
255,101
healthcare providers
95+
research programs
12
published posters and manuscripts
10
partnerships with top 30 pharma
New Research
Discover how PicnicHealth data powered medical research in 2021
This year, experts from PicnicHealth joined podcasts, webisodes, virtual summits and much more to speak to the importance of patient-centric approaches when building complete, deep real-world datasets.
Sickle cell (SC) is the most common inherited blood disorder in the United States. Red blood cells become rigid and shaped like crescent moons, preventing oxygen from getting to parts of the body. This can cause fatigue, severe pain, organ damage or stroke.
List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
Ensure You Have the Appropriate Legal Status
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
Gather and Organize the Medical Records in One Place
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
Review the Medical Records to be an Informed Advocate
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own. There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
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Stay organized.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
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Explore treatments and clinical trials.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
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Make time for self-care.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Having trouble managing your loved one's medical records?
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.
Learn more about contributing to IgAN research with PicnicHealth.
A tablet, phone, or laptop with a working camera, microphone, and stable internet connection.
A quiet, distraction-free area with enough space to walk a few steps if applicable.
A chair that you can use during any movements or tasks you’ll be asked to perform.
The tripod mailed to you via Amazon.
What to Expect
Before your video call:
Book Your Assessment
Visit your to-do list on your PicnicHealth Research Dashboard or click the scheduling link sent to your email. Note: Search for “New task for the ORBIT-CIDP Study" to find the video call scheduling link.
Receive Confirmation
Check your email for a confirmation with your scheduled video call time and instructions.
On the day of your video call:
Click on Video Link
Join your personal video call using the link we sent by email, or text message, or find it on your research dashboard.
Meet your nurse
A Registered Nurse (RN) will guide your virtual assessment, which will last about 30 minutes.
Complete the Physical Activity Assessment (INCAT)
The nurse will guide you through questions and, if needed, physical tasks to help researchers gain a deeper understanding of CIDP.
Complete the Movement Assessment (Optional)
If you participate, a nurse will guide you through three short recorded movement activities to complete as best you can:
Chair Task
While seated with your arms crossed over your chest and hands on oppositeshoulders, you’ll be asked to stand up, remain standing for 20 seconds, and then sit back down.
Arm Movement Task
While seated with your arms resting at your sides, you’ll be asked to raise both arms out to the sides until they meet above your head, then lower them back to your lap.
Finger Dexterity Task
While seated, raise your right hand with fingers extended. Touch your thumb to each fingertip in order, then reverse. Repeat with your left hand. This will then be repeated with your left hand.
Earn Compensation
Receive up to $55 for your participation:
$25 for completing the Physical Activity Assessment (INCAT).
$30 for the Optional Movement Assessment.
Recording: Your research assessment may be recorded to ensure accurate data collection. If you participate in the optional Movement Assessment, it will also be recorded. These recordings may capture your voice and responses, but identifiable information like your face, name, or background will be removed to protect your privacy.
Opt Into the Smart Insole Study Activity
Complete the opt-in survey to confirm your participation.
Receive Your Smart Insoles
Your smart insoles will be shipped to your home via FedEx and should arrive within 1 week.
Create Your Account
You’ll receive an email from Celestra Health with your account details. Follow those steps to set up your account.
If you don’t see an email from Celestra Health in your inbox, please check your spam or junk folder.
Download the App
After creating your account, you’ll be directed to a landing page with links to the App Store or Google Play. Use the link to download the correct version of the app for your device.
For illustrative purposes only, your insoles may look different
Log In
Open the app and log in using the email address and password you used when creating your account.
Enable Permissions
For iOS users: Enable Motion & Fitness and allow access to Apple Health.
For Android users: Enable Activity Recognition permissions.
Connect Your Insoles
Turn on Bluetooth, and follow the app's instructions to connect your smart insoles.
Enable Notifications
Enable push notifications to stay updated on reminders and activity progress.
For illustrative purposes only, your insoles may look different
Start Walking Sessions
When you’re ready to perform a walking session, tap ‘Start’ on the Ad Hoc Walking task card in the app.
Smart insoles are designed to fit comfortably into any pair of closed shoes
Need Help?
Should you need to contact Celestra Health support for any reason, you can submit a ticket through the Help section of the app by tapping the Submit A Ticket card and filling out the form. A Celestra Health representative will typically respond within one business day.
A fully charged device (smartphone, tablet, or laptop) with a working camera, microphone, and stable internet connection.
A quiet, well-lit space that is free from distractions.
Good lighting so your face is clearly visible; having a small flashlight or your phone’s flashlight nearby can help with skin, scalp, or joint checks.
Flexible device positioning so you can easily adjust or prop up your device hands-free if the research staff asks to view specific areas (such as your face, hands, or scalp).
Space to move in case you are briefly asked to stand or walk a few steps.
Your medication information, including your current steroid(s) and BENLYSTA® (belimumab) — either the medication bottles or a list with doses and schedule.
Time to focus without interruptions so the visit can be completed comfortably.
Before Your Video Call:
Schedule your visit
Use the scheduling link on your PicnicHealth Research Dashboard or the link sent to your email. Tip: Search your inbox for “New task for the BEACON-SLE Study - schedule your remote visit” to find the scheduling email.
Check your confirmation
You’ll receive an email with your appointment time and instructions for joining the video call.
On the Day of Your Video Call:
Join the call
Click the Zoom link sent to you by email or text message, or use the link available on your research dashboard.
Meet with the research staff member
They will ask you structured questions about your health and any lupus symptoms you’ve experienced over the past 30 days.
If needed, they may guide you through a few simple visual checks (such as looking at your skin, hair, joints, or mouth). You can always tell them if you’re not comfortable with anything.
Receive Compensation
You’ll receive up to $60 for completing your visit.
Traditionally, non-interventional studies are often limited by fragmented patient data and burdensome site visit requirements leading to unrepresentative patient enrollment and ultimately concerns about study relevance and reliability. Today, technology and AI-powered methodologies are solving these challenges, streamlining research by making studies more accessible, capturing complete patient journeys, and generating robust insights.
Long-term follow-up (LTFU) studies are often a complicated and costly requirement for life sciences companies, but they can be greatly simplified with the advent of AI and other new technologies.
As stakeholders increasingly seek more robust evidence from registries and observational studies, researchers must adopt innovative methods for generating data. Previously restricted by outdated study models, evidence generation can now be more efficient and flexible through the use of cutting-edge technologies, including artificial intelligence. New technology-driven methods frees life science companies from historical constraints, enabling a deeper understanding of the course of disease, drug effectiveness, safety, and quality of life (QoL).