In the real world, patients evolved and so did we...

Self Care Catalysts was born from our belief that patients will drive their health future and along with this, they will demand access, ownership and responsibility for their own health data, their day to day health decisions and ultimately, their health. All these are sources of powerful real world evidence that opens a window into their healthcare outcomes, a timeline of their health experiences and an imprint of their heath behaviour. 

Our company pioneered in understanding patient experiences and behaviour... in the reasons why behind the "what's". We wanted to unlock the "blackbox" of the "what's, whys and hows" of making healthcare decisions. While many digital healthcare start-ups focused on developing apps and other solutions, we were diligent and focused on digging through patient dataintelligence and applying analytics to uncover health behaviour insights. 

So, as patients evolved and began to use digital health tools, connected with their peers online, Self Care Catalysts journeyed alongside the patients to bring you their stories, in the real world, real time. While digital health tools, smart devices and solutions actively engage patients, we follow patients in their most natural environments to bring Real World Evidence by completing their full patient story. 

After all, if we really wanted to help transform healthcare, somebody needs to reveal the complete patient story, their motivations, their fears, reasons why they're not adherent to medications, the burden of their illness, impact of their treatment on their QoL. 

We're at peace with this choice... this route of deriving value by mapping their health behaviour so that we can enable patients claim their right to own and leverage their health data and on their behalf, build the real world evidence behind their health. .

To learn more about this transformation, we welcome you to discover more.

Self Care Catalysts and SAGE launch 'SAGE Health Storylines' on HIV Long-Term Survivors Awareness Day

NEW YORK, NY - (June 5th, 2017) Self Care Catalysts - a patient intelligence, analytics and solutions company partnered with SAGE to announce the release of the latest addition to its suite of Health Storylines™ self-care tools. Health Storylines™ is a unique disease management platform that enables individuals to put together an accurate story about their health to better inform themselves, their care team and researchers.

The SAGE Health Storylines self-care app was designed to support the daily health related experiences of older adults specifically within the LGBT community, including those living with HIV and other chronic conditions. The SAGE organization, (founded in 1978 and headquartered in New York) was set up to identify and meet the diverse needs of LGBT older adults. Targeted program support services and consumer resources address the unique day to day experiences of LGBT older adults and their caregivers.


The launch of the SAGE Health Storylines app comes at a time when the population of older adults as well as those within the LGBT community continues to rise. As of 2015, 50 percent of people with HIV in the U.S. are age 50 or older.
SAGE Health Storylines is a self-care app, specifically designed with a range of unique features to help individuals get into the habit of staying on top of their health. From setting up medication reminders to monitoring daily symptoms and moods, individuals can build a personal health story which can be tracked over time. In addition, the My Medical Information tool allows individuals to have important current and historical health information on hand just when they need it. The app also includes capabilities that allow users to share information with caregivers, loved ones or medical professionals safely and securely through the Circle of Support network.


“In partnership with Self Care Catalysts, we are very excited to launch a new app called SAGE Health Storylines, focusing on the needs of our community by helping HIV older adults to engage in their self-care and make better daily health decisions. It’s incredibly user-friendly, and can enhance conversations between app users, their health care providers and care managers.” states Diosdado Gica, Chief Program Officer at SAGE. “This technology-enabled programming is also a key initiative in SAGE’s Strategic Plan as we scale up our services via technology to not only be available to our NYC program participants but also to our 29 affiliates, and potentially nationally by all LGBT-identified older adults with HIV who will be able to download the app.”


Founder & CEO of Self Care Catalysts, Grace Castillo-Soyao says, “We are proud to partner with SAGE to support resources for older adults within the LGBT community. Our belief is that when patients are informed, respected, and engaged, they make better choices, resulting in better health outcomes. Our Health Storylines™ platform also collects anonymized real-world evidence to support research in the HIV and LGBT community.” The release of the SAGE Health Storylines app ties in perfectly with the recent updates its developers have introduced to the overall Health Storylines platform. The app launches on June 5th, just in time for HIV Long-Term Survivors Awareness Day. Read more about the app and download it for free at http://sageusa.org/healthstorylines.

 

About Self Care Catalysts

Self Care Catalysts is a cloud-based patient solutions, intelligence and analytics company. The Self Care Catalysts product and service portfolio are designed to provide patient-centric solutions, real world evidence, intelligence and insights to support business decisions across the product lifecycle. By leveraging the patient clout through continuous patient engagement and relationships; the collection of real world evidence from mHealth, social media, smart wearable devices, reflects day-to-day disease management and transforms data into insights that deliver better care, drive healthcare innovation and impact care delivery and outcomes.


About Services & Advocacy for GLBT Elders (SAGE)

SAGE is the country’s largest and oldest organization dedicated to improving the lives of lesbian, gay, bisexual and transgender (LGBT) older adults. Founded in 1978 and headquartered in New York City, SAGE is a national organization that offers supportive services and consumer resources for LGBT older adults and their caregivers, advocates for public policy changes that address the needs of LGBT older people, and provides training for aging providers and LGBT organizations, largely through its National Resource Center on LGBT Aging. With offices in New York City, Washington, DC and Chicago, SAGE coordinates a growing network of 30 local SAGE affiliates in 20 states and the District of Columbia.

CONTACT:

Linda Obeng - Manager, Communications, Self Care Catalysts linda@selfcarecatalysts.com 647-243-5282

Christina DaCosta - SAGE Director of Communicationscdacosta@sageusa.org 917-553-3328

To impact healthcare, understanding patient behavior is part of the equation

The goal appears simple... improve patient health outcomes and reduce costs. But sorry, it is not that simple after all. As a whole, we all appear to target the same goal that is to improve health outcomes for patients but often, we are mired in a very complex ecosystem where everyone's performance targets are at odds with each other and worse, they hardly translate to really improving patient outcomes.

I offer 2 basic observations. First, the players such as Payers (public or private) Healthcare Providers, Healthcare Administrators, Pharmaceutical companies have goals that are at odds with each other. Second, the goals often stop at the enterprise level and somehow hardly reach the end consumer, the patient.

The current equation is flawed. Tufts report on cost of drug development in 2016 + time spent on clinical documentation + other healthcare costs such as EMRs, emerging medical technologies + interventions like Population Health Management struggle to reach the ultimate consumer, the patient. For this entire healthcare spending, the effort to understand patient behavior is paltry. I think we're missing the point, in its apparent absence in the mathematics of healthcare. Healthcare is beyond cost efficiency, reduction in rates of re-hospitalization, improvements in revenue. With the patient at the core, understanding patient behavior needs to be part of the equation.

Lest we forget, with all our initiatives to mount a digital healthcare revolution, efforts to reduce costs and improve healthcare outcomes, healthcare's success is driven not only by counting multiple economic transactions but with the patient at the helm of each touch point, understanding patient behavior needs to be part of this equation. And for the expected zetta bytes of healthcare data that is expected, behavior analytics hardly makes a scene.

The success of healthcare must move beyond the mathematical and economic values of the "what’s". To influence drug adherence, impact population health management and impact overall outcomes, it's about time, we must attempt to dig deep into the "whys" of healthcare. Deriving the behavioral and sociological valuesthat need to be part of the healthcare equation.

We are living in unprecedented times when patients are willing to share their data, speak to each other online, seek support from patient organizations and adopt digital and smart devices. These are opportunities to understand patients beyond how weknew them in the past - recipients of care. Being at the forefront of their care means we can no longer ignore them.

Using Real World Evidence to Complement Traditional Healthcare Metrics

Screen Shot 2017-07-15 at 2.24.03 PM.png

Using Real World Evidence to Complement Traditional Healthcare Metrics

For years pharmaceutical and biotechnology firms have determined the effectiveness of therapeutic drug treatments using randomized clinical trials (RCTs). These trials have been the go to source for determining the safety, efficacy and performance of drugs. However, the emerging healthcare technologies have opened a whole new world of data known as Real World Evidence (RWE). Real World Evidence can best be described as data collected under normal day to day circumstances found outside of a normal RCT (www.clinicalinformaticsnews.com).

RWE closes the knowledge gap between the RCT, which focus on a small highly selected set of individuals, and real life experiences, which encase a broader reflection of an entire population’s experience in the real world, in real time. Through the analysis and data assessment of an individual’s illness, deep insights reveal there are numerous factors at play and the impact of these factors can vary from one day to the next i.e. comorbidity, psychological impact, symptom management, daily interactions, stigma, Quality of Life (QoL) etc. Understanding how these factors play a role in an individual’s life sheds light on the necessary steps to improving overall health. Using RWE, the entire ecosystem from patients to health care providers can use real world health outcomes to better assess the value of drug treatments and related services (Congizant, 2020 Insights).


The Self Care Catalysts’ (SCC) Health Storylines™ self-care management platform provides a solution for patients to log, track and monitor their daily experiences while the Patient Storylines™ analytics platform is the real world, real-time unique intelligence solution that aggregates and anonymizes the patient data sets to reveal insights.

Currently underway at SCC is the Spondy Project, which focuses on individuals living with Ankylosing Spondylitis (AS). AS is a form of chronic inflammation of the spine sacroiliac joints (located at the base of the lower back) that affects between 0.2% to 0.5% of all North Americans. The objective of the Spondy project is to gain deeper insights into the real-life daily experiences and interactions of individuals living with AS. The specific data collated is based on the use of tools such as the Medication Tracker, Daily Moods, Symptom Tracker, Fatigue Tracker and Treatment Reflections.

Preliminary results analyzed through the Patient Storylines™ analytics platform show a strong correlation between the clinically-validated Ankylosing Spondylitis Quality of Life (ASQoL) questionnaire and daily reports of the overall impact of patients’ symptoms, collected through the Health Storylines™ app. The continual assessment of AS patients’ real life, real time behaviour is a novel use of technology that will drive the final results of the AS study, helping to identify key drivers that can improve overall health care and management of AS.

Real World Evidence can shed light on specific disease therapies uncovering patient insights that are not commonly associated with a disease. Research from real world patient data is an increasingly important asset that can revolutionize better care delivery and long term health outcomes.

Telling the Rare Disease Story…

Rare diseases (also known as orphan diseases) are known to affect approximately 350 million people worldwide (Orphanet Journal of Rare Diseases, 2017). Such diseases may be considered uncommon, but for individuals experiencing and coping with these conditions, the general burden of illness and the day to day challenges are far from rare - impacting individuals and their quality of life at many levels. 

Today being Rare Disease Day, we at Self Care Catalysts recognize our patient advocacy and community partners who work tirelessly to build a network of support for patients, family and friends connecting and engaging them about not only the issues but also the avenues of support that build awareness about rare diseases. 

Previous and current partnerships have allowed us to harness our research methods utilizing our integrated system of patient support solutions, intelligence and behavior analytics. 

Project Zebra is one such campaign that engaged patients of the Carcinoid and Neuroendocrine Tumors (NETs) rare disease community (Carcinoid Cancer Foundation). Over a two-month period, patients were recruited and encouraged to capture data such as their daily moods, symptom severity, as well as regular journaling, utilizing the Carcinoid NETs Health Storylines mobile self-care management platform. 

Our unique approach of patient acquisition and engagement ensured ongoing adoption of a high tech, high touch approach which reflected the real life day-to-day carcinoid or NET experiences of patients over time. 

As a result of the study, the tracking of real life experiences allowed patients to gain a clearer understanding of their condition. The increased knowledge, awareness and attitudes towards Carcinoid and NETs patients enabled them to embrace new ways of managing their day to day symptoms, presenting new perspectives, better coping mechanisms and added support concerning health outcomes. 

Some insights from the study revealed: 

* 33% of patients with Carcinoid or NETs report between 4-9 symptoms
* 44% of patients reported diarrhea as one of the top symptom reported followed by fatigue and nausea/vomiting at 23% and 22% respectively.


Through our real world, real-time patient behavior intelligence and insights platform aggregated and anonymized data provided deeper patient insights and an outlet to share this rare disease experience. It is becoming more and more evident that medical research and stakeholders such as health care providers and payers seek efficiencies that can positively impact health outcomes including those of rare diseases. 
 

Advances in Real World Evidence, related to the burden of rare diseases are important in validating the experience of the rare disease community - especially since their daily challenges might often go unnoticed and misunderstood. 
 

On this Rare Disease Day, we recognize the efforts being made by many of our partners and empathize with patients as we continue to support not only on Rare Disease Day, but everyday to gain a deeper understanding and build awareness of conditions and day to day experiences which result in improved healthcare outcomes.