Want to learn about managing your disease from other patients? Find out about new trials and treatment options? Or add your voice to a patient community to compel researchers and drug developers to take action?
Explore our alphabetical directory to see if there is already a Patient Insights Network for your disease.
The AltaVoice Difference
Our Patient Insights Network (PIN) securely houses and safeguards data for over 400 medical conditions. Since 2007, we have built more than 80 PINs and inspired thousands of patients to join the movement to collect and share de-identified data as broadly as possible to help find better treatments, faster.
We built our PIN model with patients at the center, in control of their data. We believe that advances are made faster when data collection is standardized and advocacy groups include their data in a global network.
We always encourage the sharing of de-identified data and study findings to help patients learn how others manage similar health challenges. Sharing data also helps quantify the patient journey and build a stronger case for improving care.
Why Join a Patient Insights Network
When you join a Patient Insights Network (PIN) powered by AltaVoice, you are empowered to share your medical data and experience with a global disease community.
Our PINs make it easy for you to answer research questions, share records and test results and learn about clinical trials. By joining, you become part of the AltaVoice Patient Insights Network and help amplify the voice of patients to optimize the search for better treatments.
Explore our directory to see if there is already a Patient Insights Network for your disease.
By joining an AltaVoice Patient Insights Network, you become part of a community created to energize, inform, engage and support everyone involved in disease research. We come together to help find better treatments, faster. We encourage the sharing of de-identified data so patients can learn from each other. When you add your voice, AltaVoice makes a steadfast promise.
- We promise to safeguard your information and protect your privacy.
- We promise that you own your health information, forever.
- We promise that you control who can access your health information.
- We promise not to share your contact information or identifying information, unless you tell us to reveal it.
- We promise to honor your preferences about the types of information we send to you.
- We promise that you can stop participating in our Patient Insights Network at any time and have your information removed.
- We promise to do everything we can to ensure patient voices are heard.
Who is AltaVoice?
AltaVoice is a data company. We build Patient Insights Networks (PINs) that amplify the voice of patients to help researchers and drug developers find better treatments, faster. Unlike typical clinician-driven registries, the AltaVoice approach put patients at the center of the model. We make it easy for patients to share their health journey, contribute medical data, and maintain their privacy while being connected to the latest research, treatment and disease education opportunities. We quantify the size of the patient population and provide data to compel researchers and drug developers to take action.
What is a Patient Insights Network?
A Patient Insights Network is more powerful than a traditional registry. It’s an online platform where you can take surveys, upload your medical records, track your health outcomes and learn about the latest research and clinical trials.
AltaVoice has created PINs for more than 400 specific medical conditions. PINs store patient data in one place. The data is safeguarded and de-identified which makes it possible to share it with patients, researchers and drug developers working to help find new and better treatments for disease.
Since 2007, we have built more than 80 PINs and inspired hundreds of advocacy groups and thousands of patients to join the movement to collect and share data as broadly as possible to find new and better treatments, faster.
Why join a Patient Insights Network?
We know that creating a shared network that aggregates patient data is one of the most important things a community can do. Our Patient Insights Networks (PINs) enable researchers to study diseases, patients to learn about front-line treatments and advocates to speak on behalf of the disease community. As a PIN participant, it’s easy to answer research questions, share your experiences, contribute medical data and be connected to clinical trials and research studies in a way that protects your privacy.
Through our Advocacy PIN Program, we give advocacy groups access to our technology, tools and expert advice to help build strong patient communities. You can join free of charge, too. By adding your voice to a patient community you can help researchers and drug developers understand what it is like to live with your disease and compel them to take action. Unlike traditional registries or natural history studies, our PINs put participants at the center and give you access to the data.
How is patient privacy protected?
Our Patient Insights Networks meet the highest security standards. AltaVoice rigorously manages and operates all systems to comply with HIPAA, FISMA and data and patient protection laws. When you join a Patient Insights Network, you select the data sharing preferences that we follow. Your data becomes part of a larger pool of data and is not directly associated with you.
Only trained AltaVoice coordinators and program staff have access to your account information. We never share your contact or identifiable information unless you request it.
Does AltaVoice share participants' contact information?
AltaVoice takes participant privacy very seriously. We only share your contact or identifiable information when you request that we do. Email communications and information will only come from the AltaVoice coordinator and program staff. We distribute all messages to participants through the PIN, in accordance with the participant's contact and communication preferences. You can change your data sharing and contact preferences at any time.
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 sharing 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. De-identified data is shared with public research repositories that were developed to help the entire rare disease research community better understand disease.
What is AltaVoice's role in communicating with patients?
AltaVoice protects patient privacy. Advocacy organizations, researchers and pharmaceutical companies can request messages be sent to targeted groups of participants. AltaVoice will distribute emails with the Adovacy 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.
Can I 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.
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.