Longenesis: Centring Patient Quality of Life in Diabetes Treatment Options
Approximately 463 million people across the globe live with diabetes, a number experts expect to reach more than 700 million by 2045 (Statista, 2021). While several treatments are available, diabetes remains a leading cause of death worldwide. The primary treatment today for type 1 diabetes is insulin administration, often via insulin pumps or insulin injections. These treatments are accompanied by necessary and frequent blood sugar checks, carbohydrate counting and other life adjustments (such as switching to diet soda, carrying emergency glucagon, etc.).

Doctors and other healthcare actors often overlook the emotional and physical impact of diabetes care. Patients struggle with the heightened responsibility of managing their fluctuating blood sugar, which can lead to dangerous seizures and organ damage. Moreover, patients are not often surveyed or counselled on this aspect of their lifelong care. This oversight has serious implications for patients and their quality of life. Beyond the impact on patients' lives, there is also the question of reimbursement–which treatments should be reimbursed by insurance companies and why. For diabetes treatment to successfully achieve its goals, doctors and other healthcare stakeholders must engage patients to understand what truly works best for them. This is where Longenesis comes in. We are passionate about partnering with global diabetes treatment providers to improve the quality of life for people with diabetes.
Data Partner: Global Diabetes Leader Medtronic

To address and find solutions to these challenges, Longenesis partnered with global medical device company Medtronic to launch a study on patient engagement in the European Baltic region. Participating groups included diabetes patient organisations like the Latvian Diabetes Federation and Latvian Diabetes Association and other stakeholders, including the University of Latvia, epidemiologists, endocrinologists and anthropologists..
Longenesis Curator: Streamlined Connection with Patients

Our goal was to understand the quality of life for patients undergoing diabetes treatment. We decided to conduct a private survey. Our product, Longenesis Curator, would quickly and easily identify patients for the study while respecting patient consent and privacy,

To engage patients and receive their feedback on personal medical issues, we first needed to find patients that meet the study criteria. With patients spread across different hospitals, patient organisations and geographical locations, this step often stops critical surveys before they even begin. There is an incredible amount of data on diabetes patients, but there is no central platform encompassing this data accessible to researchers. And understandably so, as centralised databases are susceptible to infiltration and unauthorised access.
      Longenesis Curator easily facilitates patient identification for research studies. When hospitals and patient groups share data via the Curator platform, all patient data is anonymised and localised, meaning patient details remain securely on the hospital or patient group server. No information is ever uploaded to third-party databases. Curator's centralised data collection point allows researchers to identify patient groups without facing institutional access barriers. Together, this helps doctors reach target patient groups more efficiently and bring them into research studies while still protecting their privacy.
      Longenesis Engage: Onboarding Patients and Collecting Data

      With patients successfully identified (thanks to Longenesis Curator), the next step was to onboard patients into the study so we could survey how they feel about their diabetes treatment and quality of life. Longenesis Engage is a patient engagement platform that provides a patient-centric way to enact change within the healthcare system. For this study, the researchers created a patient survey entitled "Type 1 Diabetes: Assessment of Quality of Life and Disease Self-Management." The survey included questions on the emotional and physical impact of insulin injections versus insulin pumps, asking patients things like "Does it hurt to get insulin shots?"
          Longenesis Engage also incorporates patient consent throughout the study process. The Engage platform invites patients to review consent documents throughout the study and have the option to cease participation at any time. This stands apart from the typical passive engagement of patients common in traditional research studies. When patients have complete control over their data, they feel empowered to participate and share based on their comfort level.
              The Outcome: Participant-Centric Data for Meaningful Change

              More than 80 participants joined the study to share their insights with the researchers. Thanks to patient responses collected from this successful study, both Medtronic and healthcare stakeholders better understand the quality of life differences for people using insulin pumps and insulin injections. The President of the Latvian Diabetes Federation, Dr. Indra Stelmane, said it best, "Longenesis's patient engagement and data curation solutions gave us the necessary access not only to diabetic patients but also to research partners that might benefit their needs. We hope that the ongoing project is just the start."

              Building a Foundation for Patient-Centric Diabetes Care

              As Medtronic noted, these results have formed the foundation of a stronger and more patient-oriented diabetes care programme. In a follow-up survey conducted at the close of the initial study, participants shared that they valued the level of personalisation in the research and the ways the Engage platform protected their data. This personalisation is currently not prioritised in diabetes treatment. We hope these research findings will help change the narrative on how doctors select specific therapies for patients and how insurance companies evaluate reimbursement options. As diabetes diagnoses swell in the coming years, we know that supporting future research in this area will help contribute to more personalised treatment trajectories for the hundreds of millions of individuals with diabetes worldwide. We strive for a world where treatment and reimbursement are based on the individual, not one-size-fits-all guidelines.

              Prioritising Privacy in Research Studies

              Finally, Longenesis' products made this research programme more streamlined and privacy-oriented. A leading epidemiologist at the University of Latvia noted, "Digital tools that allow researchers to invite a cohort of people who meet the criteria for inclusion in a study is a new and advanced method of engaging research participants." Similarly, a Medtronic representative shared, "The digital approach and tools used by Longenesis for this project have greatly impacted the speed of patient enrolment, are easy to use by participants and researchers and comply with the highest standards of safety, data protection and are participant-centric."

              The results of this study are currently in the pre-print phase, and we look forward to sharing the final findings. We invite you to learn more about the potential of Longenesis Engage and Longenesis Curator for your research study by exploring our website.
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