Patient Warriors

My Rare ID: 24/7 Access to your Digital Health Records With Eden Lord

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Eden Lord:

My name is Eden Lord. I am a rare disease patient, mom, and caregiver, and the founder and CEO of The Dash Alliance. And we’ve created this new product called My Rare ID. My Rare ID really came about because we had a definite need of being able to communicate our daughter’s rare disease diagnosis and all of the details that went with it to emergency personnel or even hospital staff when we would approach different hospitals that were not her home hospital for treatment.

So in our instance specifically, we found ourselves in the emergency room one night and were unable to access Epic or Cerner that had all her medical records on it, and the physicians at the hospital let us know that it would be some time before they get access. Well, with my daughter’s condition of adrenal insufficiency, every minute counts. So for us it’s very crucial to make sure that she has access to the right medications in a timely manner. And even though we carry those medications on us, without a protocol from her treating physician, there’s no way to administer those medications at the emergency room.

So typically what we would self-administer on a particular evening, the endocrinologist advised us not to and wait until we got to the emergency room before administration. Which we did, systems down. Lo and behold, we found ourselves in a position where we had the medication, but no way to give it to her. So what we ended up doing was creating this QR code system where we could access copies of her PDF protocols from her physician at that [inaudible 00:01:27] hospital and be able to share that information and showed that it was validated, and that expedited her treatment and allowed us to make sure that the hospital staff administered her injection.

The challenges that we face when we’re on travel as rare disease patient are really unique. Because typically, given the rarity of these diagnoses, doctors are not particularly familiar with the diagnosis or what it entails to treat a patient with that diagnosis. So what we’re trying to do with My Rare ID is really combat some of those challenges by providing on the spot physician education that is validated by our nonprofit partners. So for instance, if you have an eye condition, we work with nonprofits in that specific disease area to be able to provide treatment protocols, baselines, and really give physicians the on the spot education that they need, that we know is coming from a trusted KOL or trusted source, and provide a baseline for treatment, so we can kind of focus on what the patient needs from a precision health standpoint once we have established what the baselines are. So we’re really excited about that functionality because that is a challenge and it’s a struggle and you don’t want your doctor to have to step away to go Google something and not necessarily be certain about the veracity or quality of information that they’re looking up. We want to be able to just put it in their hands immediately and say, “This is a trusted source, let’s get going on treatment.”

So My Rare ID card is super simple. We utilize a QR code that is easily scanned, no app, just with your phone if you don’t want anybody taking the time to have to worry about scan or downloading an app in order to scan. So when you scan this simple QR code, you’ve got identification., So you know you have the right patient. So we’re making sure that we’re treating the right patient at the right time, in a timely manner with the right treatment. And this will open up your different protocols. So it lets people know what your diagnosis is. It takes you to those helpful links like we discussed, that we have verified by KOLs and nonprofits, and it gives you a treatment path.

In some instances, a patient might have a different kind of medication. So for instance, our daughter has an Activ-vial. Some people don’t know how to use an Activ-vial. So we’ve got an embed from CHOP actually that shows how to use the Activ-vial kit, how to do the injection, and it expedites the whole process. So we’re pretty happy with how it’s turned out and we’re constantly improving things. We will be bringing on different languages so you can translate your profile if you’re on international travel. One of the features that we do have coming this fall will be engraved QR code bracelets that are customized, again, to the patient and would be easily scanned. So we’re constantly looking just to make it a better experience for patients and keep people safe.

We store a host of information. We’ve got kind of a baseline of information that we collect from every patient that’s going to be their typical demographics, information, height, weight, blood type, things that would impact immediate treatment. We also cover current medications, current protocols that they might be on in addition to whatever established diagnoses that they currently have. Specialist information, so you can actually dial their physician from their profile and make that connection and get up-to-date information. Caregiver information, we also have that downloaded and entered if there is a caregiver that needs to be reached out to. And then emergency contact information for loved ones who can also be notified from within the profile that there’s something going on, that there’s an issue. For us, another really important factor is if you do have patient carrying meds on you, there’s a special notes tab where you could indicate this is where I store my meds. It’s tailored to the individual patient.

We were excited last week because we had a patient with hemophilia sign up. There were specific protocols regarding factor and everything else that we hadn’t seen before. So we were able to take those protocols back to our hemophilia partners and say, “Hey, did you know about this? Are you aware?” And of course they were. But it was just neat to see a different approach and a different fit for a patient.

All of the profiles feature two-factor authentication, and we keep the pin number and the ID number with the QR code. So you have to have everything physically in your hand to be able to access that information. And for those patients who don’t necessarily prefer that level of security, they don’t have to enact or enable those. But our goal is to make sure that EMS has access to that information in a timely manner. We just want to make sure that we are doing our part to educate EMS, that this is the tool that’s out there and that is available. So we are rolling out EMS education kits for our users and our patient profiles to be able to go out and share the information in their communities. Let EMS know, Hey, there’s this tool, I’m using it,” and start that dialogue about what their condition is, make sure that they’re flagged in the system. So we always want to make sure that we’re doing our part to educate the EMS community and make it easy for our patient community to educate the EMS community on their own behalf as well.

What we’re finding more and more is all of the rare disease diagnosis in groups that we work with can benefit. Because it’s not just an emergency situation where you’ll be using your My Rare ID. It could be the doctor’s office, it could be trying to convey information to a caregiver at a shift change. So My Rare ID goes beyond just a PVC card. We have magnets, we have bag tags, we have key-chains, we have waterproof stickers that a lot of our users put on the inside windshield of their car.

For us, it’s really a question of how do we make sure that people have access to their information and they’re not relying on a system like an Epic or one of these other health systems, they’ve got access to what they need immediately. So above and beyond just those emergency treatment areas, we’re seeing a lot of traction with chronic illnesses, diabetics, people who might need that extra push or to inform others of medical need that they might have or disability that they might have that needs extra accommodations. So we’re also seeing some traction with epileptic patients and starting kind of to see some movement in the mental health areas so we can actually provide a more tailored response by uploading video of a patient and saying, this is kind of how somebody is behaving when they’re having a crisis or they’re having a medical need. So we’re really excited about where this could potentially go in the future, and it’s pretty boundless right now as far as the patient populations we can serve.

We intentionally do not have an advertising budget for My Rare ID. So what we are doing to grow our programs is working with the nonprofit organizations to make sure that we are having the correct information on these different diagnoses groups and these different patient profiles. We just want to signpost to the people who have already done it and done it well and point people in the direction of the best information. So what we’ve done instead is create this affiliate network program where the nonprofit organizations that partner with us come in, they share the My Rare ID items, they share that they have had input into creating it and making it the best that it can be, and then they turn around and enjoy 10% earnings back on anything that they would sell through their affiliate link. We feel like it’s important to reinvest back in these communities and let them know we really do care. And even though it’s a couple dollars here and there, it does add up.

On the flip side of that, we’ve got an affiliate partner network for our patient groups. So for people who are particularly active about sharing their diagnosis or the child’s diagnosis, they have the same opportunity to make those earnings. And maybe we’re helping with a copay. Maybe it’s just something simple, but we want people to know that we’re invested in this for all the right reasons, and we’re here to support people in any way that we can.

We think that there are opportunities to really customize the patient care and so they have more precision patient care when there is a health emergency or when they’re sharing that medical information with a new specialist or conveying that across to even a new caregiver. So it’s really trying to go above and beyond and really speak to the nuances of our rare disease situation that we face as parents and as patients, and implement those same solutions that we have sought for ourselves, for everybody in the rare disease community as whole, and then moving towards chronic illness as well.