Where is the Export-All Button?

How to reclaim control of your patient's data

toni magni, BME - afm@case.edu


Why am I here? What are my objectives?

  • Bring the orthodontic domain to a point where all or most software products are able to talk to each other easily.
  • Have doctors reclaim control over their patient's data.
  • Open Standards-based Interoperability.
  • What to look for when purchasing new software.

The Good Ol' Days

Who Owns Clinical Data?

  • The first legal owner of the clinical datum is the patient.
  • Misconception 1: Medical providers might think they own it because they paid for the equipment and they did all the work to collect it. Yes, but who paid for that work to collect it?
  • Misconception 2: Software vendors might think that they own it, because they have physical control over it.

Who Owns Clinical Data After All?

It's actually a heritage of humanity!

  • Humanity: The patients are human →
  • humans are a social species of living beings →
  • all living beings have one thing in common: they want to eliminate suffering →
  • poor health and physical pain very often lead to an increase of suffering →
  • the human is very interested in staying healthy →
  • always improving healthcare system →
  • publications, scientific research

What is the Problem?

What is the Problem?

How do I share data?

Problem 1

How do I share data?

What's wrong with sharing data this way?

How do I share data?

What's wrong with sharing data this way?

  • Efficiency: procedure is extremely inefficient
  • Security: clinical data on device not controlled by medical institution, maintainer of the data.
  • Privacy: some friend of family member might look at your phone and find sensitive data they are not supposed to see, while simply scrolling through photos.
  • Accuracy: procedure is error prone, it is very easy to send the wrong patient to the wrong person.

How do I connect my systems together?

Problem 2

How do i transition to a new system?

Problem 3

Patients waiting for their turn to re-register after the department switched from Windent to AxiUm.

How do I crunch a lot of data?

Problem 4: Research

How do I crunch a lot of data?

Problem 4: Research

  • Today's research is embarrassingly based on a tiny fraction of our population (< 100 patients)
  • A large fraction of orthodontic patient data is siloed behind the local network of the orthodontic practice, and their closed orthodontic software.

How do I crunch a lot of data?

Problem 4: Research

  • We have the technology (AI, Big Data, Cloud, High Speed Internet) make all this data accessible to research.
  • This could potentially bump up sample size by at least 2-3 orders of magnitude.

How do I give data to my patients?

Problem 5

How do I give data to my patients?

Problem 5

  • Awareness of data ownership is growing and governments are adding regulations (21st Century Cures Act, Information Blocking, GDPR)
  • How? Doctors don't know how to give patients their data.
  • Lawsuits will probably come soon.

Data Conversion Wasted Resources

Problem 6

Data Conversion Wasted Resources

Problem 6

  • A lot of time and resources spend for data conversion (import and export)
  • Data conversion is a tedious repetitive process: developers keep reverse engineering and don't share their work.

How can we solve these problems?

How can we solve these problems?

We develop the "Perfect Software"

We make use of


Humans and Standards

Humans have a history of making significant progress by adopting standards.


Measuring things (SI Units)

Tire Codes (ISO-83.160.10)

Containers, Rail Track Gauge

RCA Sound Tape Cartridge, Elcaset, Compact Cassette

Wall Socket (NEMA 1-15, NEMA 5-15)

Screws (ASME-B1, ISO-68,261,262,724,725

TCP/IP Networking (the Internet), Email, SMS

No Standards: Nintendo, Xbox, Playstation, ...

Tesla Open Source Patents


Strategic Plan of the Past

Attempts have been made in the past, but they failed. Why?

  • Fear of losing customers
  • It's work to follow standards
  • No request from customers
  • Lack of Information
  • We have used closed interoperability

Proprietary-based Interoperability

  • Custom APIs made available by Vendors
  • Documentation and implementation availability at discretion of vendor
  • Additional software that acts as bridges between these custom APIs needs to be developed
  • Single implementation allows only two vendors to link together

Proprietary-based Interoperability

  • Expensive solutions
  • When vendor upgrades or changes their product, the API often changes and the bridge brakes
  • Medical provider cannot see what's going on
  • Not sustainable solutions

Open Standards-based Interoperability

  • DICOM/HL7/FHIR: long-lasting standards
  • Documentation and implementation tools available online to everyone
  • Single implementation allows multiple vendor products to link together
  • Less Expensive solutions

Open Standards-based Interoperability

  • When vendor upgrades or changes their software, they keep DICOM/HL7 part the same
  • Medical provider has the opportunity to see what's going on
  • Sustainable solution


SNOMED Browser


Demo: HL7 - FHIR

But if they exist already, why the fuss?

  • Full implementation is not granted.
  • A piece of software could implement HL7 only to FSE.

How would the future look like?

  • Like radiology or containers today: most people don't even question the option of working without.
  • Imagine for your self.

How would your practice look like?

What can I do?

Currently Doing

What can you do?

  • Ask your IT and software vendors about implementing open-standards based solutions. Question high prices.
  • Discuss this with your fellow colleagues. Listen to more people talk about this. Try to speed up the learning curve.
  • Start Now! Set up your own PACS Imaging Server.
  • Keep your eyes pealed, keep informed.

Ask you software's support these questions

Find out if you really have control over your data.

  • The day I decide to move to a different software product, what will the process to export my data and import it into the new software be?
  • I would like to use Software B to send out my email reminders. Can you please ensure the two software products can share data both ways?