Mental health can mean a lot of different things to different people with seemingly vague definitions. MentalHealth.gov takes broad strokes to include emotional, psychological, and social well-being at the interface of how a person thinks, acts, and feels. Indicators that something is out of balance can present with a number of uncomfortable behaviors including having low or no energy, having unexplained aches or pains, or experiencing severe mood swings. It would be difficult to look through the entire list of possible symptoms and not relate at some level at some point in time, suggesting that mental wellness is just one fabric to the many layers that influence how we function on any given day. Unresolved or persistent mental health issues can lead to a diagnosis of mental illness, but it feels more fluid than other conditions or diseases that use more measurable diagnostic criteria such as abnormal lab values or imaging modalities to diagnose.
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The 1 in 4 US adults statistic may seem high, but negative stigmas surrounding mental illness have made it difficult to maintain an open dialog around mental health issues. People are willing to create an exterior shell rather than disclose their true thoughts and feelings. Similarly, a combination of negative stigmas and practical concerns can influence how sufferers access help for mental health problems. These might include how insurance is billed, should they find a therapist who accepts insurance, or whether this will now be considered a pre-existing condition when they seek future medical care. The stigma is gradually declining though it might mean that the original estimate actually underscores the number of people suffering from mental illness [2].
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Progress is being made on the research side too. There has been a large uptick in mental health treatments being evaluated as measured by a 62% increase in mental health clinical trials over a 6 year period [3]. In alignment, publications reporting mental health topics have increased exponentially (Figure 2) in the last decade. While these statistics demonstrate trends over time, the recent COVID-19 pandemic resulted in 1 in 5 adults having a significant negative impact on their mental health [4]. Mental health has found a permanent seat at the table when it comes to evaluating the complete health and wellness picture for any individual person.
The brain is complex, a collection of neurons firing signals, organizing thoughts and experiences into an evolutionarily sophisticated organ. No two brains are the same. Mental illness can be linked to structural changes in the brain [5], but there are many variables that impact how the brain functions when it comes to mental health.
Dehydration can lead to mood and performance decline in children and poor cognition in the elderly [6]. Not surprisingly nutrition impacts cognitive function during aging. The gut microbiome has been linked to neurological disorders including depression, anxiety, Parkinson's disease, and autism and rightfully has earned the title of “Second Brain” due to its connection to the central nervous system [7]. Environmental factors shape our world before we are even born [8]. It leaves no doubt that there are both internal and external variables that impact the brain in positive and negative ways.
There are many examples of the bidirectionality that mental health can have as it relates to other conditions (Figure 3). This is all to say that biology has a strange way of mixing signals when it comes to basic survival.
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According to the National MS Society, multiple sclerosis (MS) patients deal with an increased amount of stress attributed to a number of reasons including diagnosis uncertainty, financial implications, and the unpredictable nature of disease progression [10]. In addition to added stress, studies found 30.5% of MS patients suffer from depression and 22.1% from anxiety [11,12].
Children are not immune to the impacts of chronic disease when it comes to mental health. Pediatric patients with chronic diseases carry a 6 fold increase in future diagnoses with a mental illness compared to their healthy peers [13]. As an aside, caregivers for children living with chronic disease are also higher in terms of increased anxiety and depression [14].
In total, around 16% of persons living with chronic disease have dual diagnoses with a mental health disorder. Patients are forced to deal with the healthcare system on multiple fronts to be adequately treated. This means that they are likely receiving care from multiple providers, at different sites, with unique treatments, follow-up tests and frequencies to manage. From a cost perspective, facing chronic disease and mental health issues equates to an increase in healthcare expenditure of 58% [15]. For the patient or caregiver, this means taking on a new role as ‘disease manager’ in order to adequately track and navigate the healthcare system and patient journey.
Better support for patients with chronic disease can reduce some of the burden carried by patients. The PicnicHealth timeline can serve as an invaluable tool in creating a medical record database for patients to maintain all relevant touch points within the medical system (Demo the PicnicHealth timeline).
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Giving patients control over their medical management can help ease some of the stress introduced from a chronic illness diagnosis.
"I have found having all of my medical records available in the palm of my hand such an anxiety reducer! Recently I was calculating how much weight I lost since January and I did a search on my timeline for "Weight" and it brought me right to my visit in January and the weight was right there. I could download the whole visit summary if needed. Now when I walk into a new doctor's office or facility I don't need to spend time making sure my records got there. I don't need to worry about remembering details, since Huntington's disease impacts my memory!" - Laura Hillard, HD Research Participant
Often following a diagnosis, a patient may struggle with feeling overwhelmed. Some want to participate in research studies or clinical trials but may be turned away if they also have a mental health diagnosis. RWD is data generated from patients outside of a clinical trial, in the ‘real world’. Patient health data exists in many sources from electronic health records and administrative claims to wearable technologies collecting real time data. There are endless questions that can be asked of RWD in an effort to better understand what it means to be a patient in the real world.
RWD is uniquely primed to support challenges around mental health clinical research. This is largely due to the fact that patients are not excluded for having comorbid conditions and are closer to representing the actual patient population.
PicnicHealth has created a RWD platform to help researchers access patient data that can support their research initiatives. Once the patient signs up, PicnicHealth retrieves all the medical records associated with a patient including medical records, imaging, and lab reports across payer systems and care networks. As mentioned, patients benefit by receiving a medical timeline while contributing to research that may change the future of care for their disease. This unique patient-centric system creates an environment where patients can further participate by completing PROs and answering surveys about their current disease state, yielding even more data to help researchers. Patient data is prospectively collected as they navigate their disease journey ultimately creating the best representation of patient data collected from the real world.
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PicnicHealth has built a cohort of 1500+ Parkinson’s Disease patients, delivering 5-7 years of historical and prospective data across all providers and care sites. Key disease elements are abstracted from both structured and unstructured parts of the medical records. The resulting dataset is both complete and deep reconstructing the patient journey.
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The data continues to grow in richness as more patients join and records are retrieved and abstracted. Capture of non-motor symptoms, specifically those related to mental health, are part of the growing dataset. In an early look, it was discovered that 68% of the patients in the cohort have comorbid mental health conditions with sleep disorders, anxiety, and depression as the most common.
Parkinson’s disease is not an anomaly. Mental health impacts patients across chronic diseases and is important to consider within the larger scope of disease management. That being said, it is worrisome that our traditional system for clinical research may exclude the majority of patients from participation. Better care and solutions should be for all patients including those impacted by mental health. RWD can support research goals that include study of the whole patient, not a single condition in isolation.
If interested in learning more about the PicnicHealth research platform or the Parkinson’s disease cohort, contact us to set up an introductory call
patients onboarded to platform
medical visits processed
facilities provided medical records
healthcare providers
research programs
published posters and manuscripts
partnerships with top 30 pharma
Discover how PicnicHealth data powered medical research in 2021
New methods to improve the identification of lupus nephritis patients in RWD using narrative text extraction were presented at the American College of Rheumatology Convergence virtual conference.
Ultragenyx and PicnicHealth presented preliminary data at the International Network for Fatty Acid Oxidation Research and Management (INFORM) LC-FAOD conference, showcasing the power of linking medical records to patient reported outcomes to better understand the complexities in LC-FAOD care.
We joined Roche-Genentech and other key researchers to introduce a longitudinal, patient-centric Hemophilia A real-world dataset that features abstraction of data points from medical records at scale and supplementation with patient-reported outcomes at the American Society of Hematology annual meeting.
Also at ASH 2021, Roche-Genentech and our research partners presented new findings looking specifically at mild and moderate hemophilia A patients found in PicnicHealth’s RWD cohort to better understand disease burden and healthcare resource utilization in this historically underrepresented patient group.
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.
CMO Dan Drozd joined The Evidence Base to discuss how to build and measure data completeness
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BBC Storyworks and Roche featured Noga Leviner and her medical journey in “The power of partnerships”
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CEO and Co-founder Noga Leviner joined our partners Komodo Health to discuss patient-centric RWD in “For the Health of It”
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PicnicHealth experts joined Arsenal Advisors in 3 summits to highlight our research partnerships
(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
patients onboarded across 19 conditions
medical visits processed
healthcare providers
Facilities provided medical records
Change Champions onboarded
Research programs
published posters and manuscripts
partnerships with top 30 pharma
At ASH 2022, Genentech, a member of the Roche group, and our research partners presented their study examining the epidemiology and bleeding phenotype in females with mild Hemophilia A (HA), a minority group that is poorly characterized, compared with a cohort of males with mild HA.
At EHA 2022, Novartis used PicnicHealth’s real-world data to characterize sickle cell disease and burden of illness in the United States.
Genentech leveraged the FlywheelMS cohort to describe COVID-19 vaccination patterns and COVID-19 outcomes among people with multiple sclerosis (pwMS) and in subgroups of pwMS, including by disease-modifying therapy (DMT) status.
We partnered with Alexion, AstraZeneca Rare Disease to help identify flares in Lupus Nephritis patients by combining structured and unstructured medical records with lab data.
Cohort Overview. Understand patient healthcare utilization throughout disease history with ability to probe for meaningful mentions and events.
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.
Addition of Narrative Text Abstraction to ICD-Based Abstraction Significantly ImprovesIdentification of Lupus Nephritis in Real-World Data
Join our early breast cancer registry to be counted and share your story with research.
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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.
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.
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.
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
Learn MoreWhen 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.
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.
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.
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.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.
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