Want insights you can’t find in electronic health records? Faster trial enrollment? Need data to conduct targeted studies, build your business case or comply with post-market surveillance requirements?
Amplifying the Voice of Patients
We collect, curate, coordinate and deliver data from patients and clinicians faster, and for far less, than traditional registries or CROs.
We enable product teams to expand research programs via existing Patient Insights Networks. Or we can launch and brand a new PIN. We protect patient privacy while collecting data from around the world to help you understand the symptoms, diagnostic process, quality of life and cost of living with serious health conditions. Our flexible Launch, Extend, Monitor, Follow methodology is designed to drive efficiency and support your needs at every stage of drug development.
Who is AltaVoice?
AltaVoice (formerly PatientCrossroads) is a data company that amplifies the voice of patients to optimize the search for better treatments for diseases. We collect, curate, coordinate and deliver data from patients and clinicians. We connect patients with drug developers, researchers, clinicians and advocacy organizations via our secure Patient Insights Network (PIN) to accelerate progress. Our PINs deliver patient insights faster, and for far less, than traditional registries and CRO organizations.
Since 2007, we have developed programs for 400+ diseases through our work with over 100 advocacy groups, NIH, PCORI, biotech and pharma companies. Our PINs enable anyone—from individual patients to advocacy groups to global research organizations—to collect and share safeguarded and de-identified health information.
What is a Patient Insights Network?
A Patient Insights Network (PIN) is much more than a traditional registry. It’s an online, interactive platform for collecting, curating, coordinating and delivering patient data. You access it using a standard browser on a computer or mobile device. It’s HIPPA and FISMA compliant, secure and research-ready.
AltaVoice has created a network of networks made up of individual PINs established for more than 400 specific medical conditions. Storing patient data in one place benefits patients, researchers and drug developers working to help find new and better treatments for disease. You can mine our existing data or let us build you a customized PIN, in any language. We can easily expand or reconfigure PIN functionality to match any stage of drug development.
A PIN lets you build global, engaged patient communities and conduct customized surveys. Via a PIN you can pre-qualify patients to streamline trial recruitment. You can customize notifications and content to improve engagement and adherence. You can also capture clinical data electronically and deliver compliant educational materials. Our PINs make it easy for patients to share their experience, contribute medical data and be connected to research and clinical trial opportunities.
What types of data can be collected?
Patients create accounts, complete demographic information and consent to participate. Then they can:
- complete one or more health questionnaires
- identify their healthcare providers
- connect their healthcare system patient portal
- track medication usage
- track meaningful lab values
- upload relevant medical reports and important results
We can also develop targeted studies to meet your research needs.
How can the data quality be verified?
AltaVoice staff can provide data curation services by medical professionals who ensure patient provided data is accurate and complete.
Can a PIN import data from Electronic Medical Records?
Yes, AltaVoice can accept EMR data from BlueButton capable data files as long as the patient has access to these files through their healthcare provider portal. Past history, as well as on-going medical records can be uploaded to the AltaVoice Patient Insights Network.
Can clinicians enter patient data?
Yes, clinical centers or research sites can enter data for patients associated with their organization. For studies that do not have a pre-determined set of sites, a participant's clinician can augment patient- provided data by completing provider questionnaires to enter relevant history and medical findings.
Can multiple diseases be represented in a single Patient Insights Network?
Yes. The AltaVoice Patient Insights Network can support multiple diseases, as well as multiple outreach partners for the same disease. PIN access can be granted on an organization and disease basis. This enables large organizations to collect and aggregate PIN data to facilitate pan-disease analysis.
Can the data be collected under an IRB?
Yes, AltaVoice can support one or more consent processes for individual studies or sub-studies. AltaVoice clients often use a central IRB like Chesapeake IRB for review of protocol and consent materials.
How is a Patient Insights Network marketed?
Patients can learn about a PIN via advocacy outreach, social media, Internet searches, healthcare providers, or even testing labs.
AltaVoice works with each client to identify the outreach partners and recommend marketing strategies. In situations, where an advocacy organization does not exist, AltaVoice can take responsibility for marketing and outreach for a drug developer interested in launching a PIN.
How can patients be recruited into clinical trials and studies?
PIN data can be used to help screen participants for potential trial and study eligibility based on specific inclusion and exclusion criteria. AltaVoice facilitates trial recruitment in a manner that protects participant privacy. We send study notices to qualified participants and connect them to the relevant study information. Participants remain anonymous until they request contact from a study coordinator.
Can data be collected worldwide?
Yes. Our Patient Insights Networks have been used by many international partners. There are multiple models for recruitment. A single global program can be established where all partners refer to the same PIN, or an umbrella model can be used so that each country has a customizable portal into a Patient Insights Network. Google Translate is provided on the site by default, or the site content can be manually translated.
Who owns the data?
Patients own their data. Patients opt in and choose to share their information. They can just as easily opt out. We are grateful that so many patients are willing to share their de-identified information to support the development of new treatments.
AltaVoice acts as the trusted third party gatekeeper of information, gathering data and ensuring its safeguarded and shared appropriately. Due to competitive or regulatory requirements, there are situations where drug developers or researchers collect data that they want to keep private. However, we encourage all PINs to share data broadly to further research and charge a fee for keeping data private.
What is AltaVoice’s role in communicating with patients?
AltaVoice serves as a trusted intermediary. We can distribute emails with program branding to patients who have expressed their willingness to receive information. Messages may target participants who meet specific criteria or be sent to all participants in a PIN.
Does AltaVoice share participants' contact information?
AltaVoice protects participant privacy. We only share contact information if a participant requests that it be shared. We distribute all messages to participants through the Patient Insights Network, in accordance with the participant's contact and communication preferences.