We are a company that offers integrated collaboration, science and technology consulting services and software and platform as a service (PaaS) solutions for advocacy groups, pharmaceutical and device companies, medical and research centers, and professional healthcare associations.
Our philosophy is “the more the merrier” – we strongly believe in forming dedicated groups of people and organizations who bring their special and varied talents to the missions of education, emotional support and advancing clinical trial research for treatments and cures.
We call it searchSculpting™ – we start with a complex combination of proprietary search algorithms, cast a wide and deep net to haul in scientific papers, videos, news, conferences, movies and much much more. Our experts then review and rank it all so only the best makes it into the curation library for our community. (Our dev team adds a little magic along the way to make it all gel together.)
We call it communitySculpting™ – through our Internet research, interviews and conversations with community leaders, we create a 360 degree view of the stakeholders and devise outreach and engagement tactics customized for that ecosystem of patients, caregivers, advocates, and healthcare and allied health professionals.
We know that when industry does what is right for patients, they do what is right for their business too. So, our rare medical communications put patient and caregiver needs front-and-center. The communications tactics we design and execute are intimate, targeted, multi-dimensional, and built on an unparalleled insights-driven strategy. To design this insights-driven strategy we first harness the power of collaboration™ to understand the needs and wants of all rare disease stakeholders. Then, we couple that understanding with the science of the disease and treatment to generate insights that pave the way for valuable shifts in the community. Built on these insights, our strategy provides the roadmap to achieve meaningful, measurable success for all stakeholders.
Rare is different, so our approach to rare scientific publications is different. While we may start with the science and clinical trials, more often than not we find: 1) a paucity of clinical and natural history data; 2) a wide range of audiences that need to be informed, and; 3) a variability in how those audiences like to receive their information. We get to know the multi-stakeholder community, make a commitment to open access to ensure as broad a reach as possible, consider the many relevant audiences and create a robust scientifically-driven publication plan to reach them all.
The FDA is welcoming real world evidence to support new drug applications. We understand how to vet data sources, hypothesize and recognize correlations generated by our own data collectors – like onevoice.world and myrareJourney™ – that contribute to the Patient-Powered RWE data mix with real life events, sentiments, natural history data and more…
www.onevoice.world is a customizable modular software platform for community building. It is a combination of sophisticated next-generation software and professional management services creating a “one-stop-shop” for patient and community engagement and data collection. Consider how you would like to support or provide one of our communities!
onevoice activates rare disease communities by giving them 3 solutions dedicated to their particular rare disease:
2: hand curated knowledge by experts in many formats to suit learning styles
3: clinical trial information including a tool to match people with recruiting trials
Real world evidence can provide valuable insights – particularly to supplement clinical trial evidence. My rareJourney is an opportunity for people in the rare community to visualize their rare diseases and share with others to provide guidance and support. This software is designed to maximize attraction, learning and repeat interest for building their sparklines! Each time a member uploads a photo, event or emotion, we provide them with a “hint” to more information and other members who are on similar journeys in time and space! Plug it into a onevoice custom platform, bolt it onto your organization’s existing website, or launch it as a stand alone product. Start collecting Patient-Powered RWE early or see if we have available databases!
We have a registry module that can be customized to match the specific data collection needs of that particular rare disease. We can integrate the registry into any onevoice platform or bolt it onto any existing website. Gather data critical to developing treatments and services for the rare disease community – ask us for a demo!