This guide will help you become confident searching for Patient Organizations (POs) in Axcela Bio. We recommend starting with the steps below, since they unlock additional features and help you and your team get the most value from Axcela.
We’ve split the guide into three sections:
1. Using Filters
Filters help you find Patient Organizations (POs) that match your criteria—from broad exploration to highly targeted lists you can act on right away.
You can combine multiple filters to find Patient Organizations (POs) that best match your strategic goals. Filters let you narrow results by conditions, location, organization type, social media presence, and other key characteristics.
Conditions
Every Patient Organization in Axcela Bio is assigned one or more conditions using a combination of large language models and manual review.
Primary vs. Secondary Condition
Each Patient Organization (PO) in Axcela Bio can be tagged with Primary and Secondary conditions.
Primary condition: The condition is a PO’s main focus.
Example: The Swiss NASH Foundation has NASH as a primary condition.Secondary condition: The condition is within a PO’s scope, but it is not the main focus.
Example: Liver Patients International focuses on liver disease broadly, and NASH is one of several secondary condition.
Please note that a PO can have multiple Primary conditions and multiple Secondary conditions.
Our Disease Ontology
Axcela Bio's disease ontology is built on a combination of the Mondo Disease Ontology, along with supplementary keywords for our disease ontology
Mondo: Our ontology is built on the Mondo Disease Ontology, which provides superior interoperability and cross-linkage to other major ontologies
Supplementary keywords: We have expanded our ontology with keywords that are not strictly disease-related and start with the prefix SUPP_
Location
Filter based on the country where a Patient Organization (PO) is headquartered. For US-based POs, state-level filtering is available.
Type
Type describes the organizational structure of a PO. Each PO falls into one of the following categories:
Umbrella: A PO made up of independent member organizations with different names.
Example: European Liver Patients’ Association, which unites and represents multiple European POs focused on liver disorders.Parent: A PO with multiple chapters that use the same name and brand.
Example: American Liver Foundation, which has several state-level affiliates.Affiliate: A local PO that is part of a larger Parent organization.
Example: Susan G. Komen Puerto Rico, which is an affiliate of the Parent PO Susan G. Komen.
Social Media
Each Patient Organization (PO) has its social media channels and follower counts mapped across key platforms. You can filter by specific channels to find POs with a strong presence on the platforms that matter to you.
Industry partner
Indicates whether a Patient Organization (PO) has received payments from a life sciences company. This is based on publicly disclosed transfer-of-value reports from EFPIA member companies. You can filter for POs that have received payments from a specific company or any company.
Characteristics
We continuously review public information and activity for each Patient Organization (PO) and classify their work across five engagement areas. If a PO is active in any of these areas, it will be tagged accordingly:
Research: Involvement in research-related activities.
Patient registries: The PO runs its own registry or directs members to an external registry. Linked registries are shown where available.
Policy: Participation in policy or regulatory activities.
Review boards: The PO engages with regulators such as the FDA or EMA through advisory or review boards.
Lobbying: The PO has documented lobbying activities with the US Senate or the European Union. For US lobbying activities, you will see the specific bills that are being supported.
Awareness: Efforts focused on disease awareness and education.
Patient Support: Services such as peer support, caregiver support, or disease management education.
Clinical Services: Clinical or care-related services for members, including care coordination, reimbursement support, access to specialists, or operating clinical facilities.
2. Result analytics
This view shows aggregated analytics for the Patient Organizations (POs) you’ve filtered. It helps you quickly understand the market and landscape you’ve defined.
In addition to aggregated data from the filters above, you can also see the total follower count across channels in Total Reach, as well as a the distribution across key social media channels.
3. Sorting search results
Your results can be sorted by a range of key attributes, making it easy to quickly identify the best-fit Patient Organizations (POs).
