HAERO connecting solution ecosystem

AOHQ (Angioedeme Hereditaire du Quebec/Hereditary angioedema of Quebec)

HAE patients to better manage and monitor their condition, no more paperwork (instead of losing many hours a week filling the paperwork, you can do it with the HAERO app in few minutes and afterwards you can generate a report and just submitted via email to your physician prior to your appointement. Resulting in a more efficient appointment). 

Capture real world data to advance the care of HAE in Canada. This will help payers for the RFP's knowing what treatment is more effective. Also many scientific publications will results from dose data. 

Record attacks and track treatments, measures the efficiency of each treatment. At the end end of the day the physicians will be able to give the patient the appopriate treatment.

Optimize patient engagement in a social network to share with other patient their experience and find solutions. At the end of the day it will result in the fact that they are not alone anymore and that there is a whole community supporting them.

Virtual passport for the ER's physicians to accelerate their admission at the ER when in crisis.

Advance the care of HAE patients through real world data.

We have our own open AI that we have built were you can ask any questions in regards to HAE.

The HAERO app system is a patient focused solution that offers a comprehensive, user-friendly platform for:

HAE patients to better manage their condition

Capture real world data to advance the care of HAE in Canada

The HAERO app offers a comprehensive and intuitive feature set for HAE patients to record attacks and track treatments

Help patients at the ER with medical vertual passport

Ask Jack is our own open AI that we have built were you can ask any questions in regards to HAE. Our library contains thousands of pages on study’s, publications, clinical trials and much more.

Patients increase the quality of life with a simple solution to manage HAE

Payers to monitor inventory and have supporting data for the RFP's

Physicians to have a direct access if treatment is adequate for patients and also resulting in scientific publications.

Everything mention above is already being use by over 300 members.

We are HIPAA and PIPEDA compliant

We have a unique solution, that contributes for patients, payers, physicians and pharma industry. We make sure that we answer all the needs for the above.

Increase quality of life for patient to manage HAE

Contibute with payers to make sure they have all the data they need to make the right decision when it comes to RFP's and also manage the inventory

Giving physicians a direct access to the patients reports and make life easier for appointments/followup and see wich treatment is more effective

Pharma industry will have reports on how there treatments are doing

Scale up our growth to give a maximum access to patients around the world and make life easier for them.

I am the president of the patient association for now over 8 years.

I am an entrepreneur and manager, having worked for several multinationals and founder of companies. I am the spouse of a patient with type 3 HAE.

I have specific goals for HAE, I give my time and expertise, so that the disease may be recognized by the general public, the various professional medical bodies and develop relationships with pharmaceutical firms.

I am the head of the AOHQuebec since 2015, already have several major strategic and informational breakthroughs to my credit, both for patients and health professionals.

I puts forward a very effective communication plan to reach a larger pool of patients.

We are now the #1 reference in the french community worldwide.

The HAERO app system is a patient focused solution that offers a comprehensive, user-friendly platform for:

• HAE patients to better manage their condition
• Capture patient reported real world data to advance the care of HAE in Canada

Most HAE patients in Canada are interested in used a digital tool for HAE

The HEARO app system has three components:

1. The HAERO mobile application: offers comprehensive and intuitive feature set for HAE patients to record attacks and track treatments. It also allows to track medication inventory, and history
2. The data cloud:

1. 1. HIPPA and PIPEDA certified for data security
   2. Patient confidentiality and anonymity is a priority

1. The MiMonotor dashboard:  an online dashboard that has been optimized to show key and relevant data outputs from the HAERO app

1. 1. Data outputs include but limited to:

                                                               i.      Attack severity

                                                             ii.      Medication dose used

                                                           iii.      Medical frequency used

                                                           iv.      Treatment  location

                                                             v.      HAE attack/ episode duration

                                                           vi.      Body Areas affected

                                                         vii.      Patient reported triggers

This system will enable reporting unprecedented data in the HAE rare disease space that can unveil the effectiveness of medications used, patient compliance, treatment trends and modalities, cost effectiveness, disease severity levels, as well as quality of life level data. All of which can be analyzed and used to inform the medical community and initiatives to advance the care of HAE patients in Quebec and Canada.

More then 300 users

It is not a connected App yet, but will be in a few weeks from know and will be able to generate a lot of data on our Mimonitor platform.

AOHQ : 2 full time

Silsstone Group : 1 full time and 2 part time

4 years

1 french speaking Canadian

1 Libanese/Canadian

3 Indian

Hereditary Angioedema (HAE) Management and the HAERO App: Enhancing Patient Care, Services, and Advancing Research

Hereditary Angioedema (HAE) is a rare genetic disease that causes unpredictable and painful attacks of swelling in various parts of the body. These attacks, which can last for days, significantly disrupt daily life. Symptoms range from mild to severe and can include:

• Swelling in the face, arms, legs, hands, feet, throat, abdomen, or genitals
• Excruciating abdominal pain
• Nausea and vomiting
• Airway swelling, which can be life-threatening

Managing HAE is highly individualized and can be costly, with expenses ranging from $30,000 to over $550,000 annually, depending on medication type, frequency, dosage, attack rate, hospitalization, and productivity loss. Therefore, understanding the impact of HAE on patients' productivity, quality of life, medication usage, efficacy, safety, and cost-effectiveness in real-world settings is crucial.

The HAERO App: A Comprehensive Tool for Patients and Healthcare Providers

For Patients: The HAERO app is designed to track HAE attack episodes, severity, and their impact on quality of life. Patients can document medication inventory, treatment doses, and frequency, and share this information with their healthcare providers. The app also features a dashboard displaying key statistics. By connecting to the cloud, patients contribute to a database that the AOHQ patient group can use confidentially to advance HAE care. Notably, most society members have shown interest in participating in such initiatives.

Services Provided to Patients:

• Personalized attack tracking and medication management
• Access to educational resources and support networks
• Regular updates and reminders for medication
• Direct communication channels with healthcare providers and other patients
• Emergency assistance information for severe attacks

For Healthcare Providers: The data shared through the HAERO app provides valuable insights into each patient's condition, helping providers manage HAE more effectively based on comprehensive disease and treatment histories.

Services Provided to Healthcare Providers:

• Detailed patient reports and dashboards
• Access to anonymized patient data for research and treatment optimization
• Continuous professional education and updates on HAE treatment advancements
• Potential for integration with existing electronic health record (EHR) systems

For the Medical Community: The anonymized data outputs offer a rich source of information for publishing patient-reported outcomes on usage trends, compliance, efficacy, safety, and quality of life. AOHQ aspires to collaborate with the medical community to establish a Canadian HAE registry, further enhancing research and care.

Services Provided to the Medical Community:

• Access to anonymized comprehensive HAE data for research and publications
• Collaboration opportunities for clinical studies and trials
• Potential for establishment and maintenance of a national HAE registry
• Regular updates on patient care trends and treatment efficacy
• Potential platforms for sharing best practices and case studies

For Payers: The data can be used to assess the cost-effectiveness of existing treatments and potential new market entrants, better manage tenders, and make informed decisions based on real-world clinical value.

Services Provided to Payers:

• Details reports of treatments usage
• Regular reports on treatment outcomes and patient quality of life
• Collaboration opportunities for healthcare policy development

We receive grants from pharma industry : CSL Behring, Takeda and Biocryst

A lot of work is done by our team (AOHQ) so we are able to keep the cost very low. Most of the money goes to are 3rd party working on creating an maintaining the technology (around $150 000/year).

What's in it for the industry :

For the Industry: The insights from the HAERO connected app system help identify unmet needs, improve forecasting and pricing strategies, and demonstrate the value of both current and pipeline products.

Services Provided to the Industry:

• Reports on market trends
• Data on patient and provider needs and preferences.
• Assistance for evidence generation for product efficacy and safety
• Opportunities for collaboration in clinical research and trials

The HAERO app exemplifies a business model that not only improves patient management and care but also provides valuable services and data to stakeholders across the healthcare spectrum. This drives advancements in treatment, research, and economic efficiency for HAE.

Our ultimate goal is to scale up and replicate the same technology (business model) for other disease.