Want to organize patients around the world? Build a research-ready community? Accelerate the search for new and better treatments in a way that puts patient’s privacy first?
Start an Advocacy Patient Insights Network
We give advocacy groups access to our technology, tools and expert advice to help build strong patient communities, at no charge. Co-brand a Patient Insights Network with us using your look and feel and messaging. Or, create a more inclusive PIN and recruit other foundations to join in a global program. We can leverage our expertise to engage drug developers to upgrade your PIN or expand your marketing and outreach so you can take full advantage of our solutions. Learn more
The AltaVoice Difference
We built our business model with patients at the center, in control of their data. We believe that advances are made faster when data collection is standardized and shared. One robust network gives researchers and drug developers access to the largest patient populations worldwide.
Our Patient Insights Network (PIN) is a network of networks that securely houses and safeguards aggregated data for 400+ medical conditions from more than 100 advocacy organizations. Since 2007, we have built more than 80 PINs and inspired advocacy groups to join the movement to collect and share data as broadly as possible to bring new and better treatments to patients, faster.
Explore the Patient Insights Network PIN Data Portal
AltaVoice has Patient Insights Networks (PINs) for more than 400 diseases. You can search by disease or by Advocacy organization. When you find a topic of interest, just register or log in to view the infographic.
Who is AltaVoice?
AltaVoice (formerly PatientCrossroads) is a data company that amplifies the voice of patients. We do that 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 pharmaceutical companies. Our PINs enable anyone—from individual patients to advocacy groups to global research organizations—to collect and share safeguarded and de-identified medical information.
What is a Patient Insights Network (PIN)?
A Patient Insights Network is much more than a traditional registry. It is an online platform for surveying patients, uploading medical records, tracking health outcomes and sharing de-identified disease data. It’s HIPAA and FISMA compliant, secure and research-ready.
AltaVoice’s Advocacy PINs help organizations generate research and academic interest, prepare the community for trial recruitment and ultimately generate more funding. Unlike typical clinician-driven registries, patients are at the center of our model. Our PINs make it easy for patients to share their experience, contribute medical data, and maintain their privacy while being connected to the latest research, treatment and disease education opportunities.
We build and host PINs for advocacy groups at no charge. We also provide expert advice and free tools to support marketing and outreach. We diligently protect patient privacy and share de-identified data with their permission. We know, from more than a decade of experience, that sharing disease data helps breakdown silos and optimize the search for new and better treatments.
You can work with us to co-brand an introductory Patient Insights Network with your look and feel and messaging or take a more inclusive approach so you can recruit other foundations to join the global program. We can leverage our expertise to engage drug developers to upgrade your PIN so you can take full advantage of our solutions or fund your marketing and outreach.
Why does AltaVoice provide the Advocacy PIN at no charge?
We provide the Advocacy PIN at no charge to inspire advocacy groups to start collecting data from patients living with the estimated 10,000 diseases that we know of today.
Our Advocacy PIN lets patients and family members create accounts, provide demographic information and respond to a pre-populated set of standardized baseline questionnaires that capture disease history, family history, quality of life and cost of care information.
Your organization can co-brand an AltaVoice Advocacy PIN with your logo as well as ours. You can also customize parts of the home page to tell your story.
We encourage organizations take a more inclusive approach so you can recruit other foundations to join the global program.
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.
Who has access to the de-identified data?
Through our Advocacy PIN Program, AltaVoice partners, sponsors and participants have access to the de-identified data. With permission from PIN participants, researchers, healthcare providers or other professionals with interest in the disease can be granted access to the data as well. It will be possible for participants to contribute their de-identified data to public repositories developed to help the entire rare disease research community better understand disease.
What is AltaVoice's role in communicating with patients?
Advocacy organizations, researchers and pharmaceutical companies can request messages be sent to targeted groups of participants. AltaVoice will distribute emails with the program’s branding to patients who have expressed their willingness to receive information. Communications to participants are only sent by AltaVoice trained PIN coordinators. AltaVoice only shares a participant’s contact information if they grant permission.
Does AltaVoice share participants' contact information?
AltaVoice protects participant privacy. We only share a participants' contact information if they request that it be shared. We distribute all messages branded with your logo to participants through the Patient Insights Network, in accordance with the participant's contact and communication preferences.
What common data is collected for each disease?
AltaVoice collects data in a standardized fashion to maximize the potential for pan-disease analysis. In partnership with disease experts and PIN partners, topic specific survey sets have been developed to expand the common data collected and enhance analysis across diseases. You can see our standard surveys when you enroll in our Advocacy PIN program.
Can disease-specific information be collected?
Yes. After your PIN is launched, you may develop a survey to collect answers for up to 40 single/multiple choice questions at no charge as long as you are willing to share the de-identified data. For an additional cost, more extensive surveys can be implemented.
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.
In our Advocacy PIN Program, participants opt-in to the program and are then presented with one or more surveys or IRB approved studies, available for a given PIN. This two-level model makes it convenient for patients to register and join one or more IRB approved studies.
Can PIN Partners access patients' contact information?
PIN Partners can receive the email address from participants who choose to share their email address to join the organization’s mailing list. Email addresses are not provided in conjunction with any de-identified data, nor other identifiable data. No other users or parties can be given a participant's email address, unless the participant requests it. AltaVoice acts as the trusted intermediary, facilitating all contact with PIN participants.
What are the marketing requirements of a PIN Partner?
To qualify as a PIN Partner, an organization must have the ability to contact patients and encourage participation during events or planned outreach at least three times per year. Organizations must agree to place a link to the PIN on their homepage and in relevant communications. The more effort an organization puts into promoting its PIN, the more valuable the data becomes for all.
Can a PIN be established for a condition not yet represented? Can more than one PIN be established for a condition?
Advocacy organizations can create a Patient Insights Network to build a patient community, even if a similar community already exists. We make it possible to brand each PIN to represent a specific organization AND aggregate the data so that there is one source for data on each disease, even if multiple advocacy organizations exist. Our most successful programs are built around an inclusive PIN identity that is used by all groups and foundations, creating a single, cohesive resource for the disease community. We can leverage our expertise to engage drug developers to fund your marketing or upgrade your PIN so you can take full advantage of our solutions.
Are disease organizations outside the US eligible to partner?
Can participants outside of the US participate in their local language?
Google Translate is used to translate the site, and with industry sponsorship, we will manually translate the site as necessary.
Can participants see other participants' responses?
Yes. Participants can view the aggregate set of de-identified data for each survey they complete, unless portions of the data are kept private. We encourage broad data sharing to help patients learn how other people are managing similar challenges.