BROOKE GLADSTONE:

So who owns the data that is collected from inside your own body? Hugo Campos has been trying in vain to gain access to the raw data collected by a heart monitoring device he has implanted. Hugo welcome to On the Media.

HUGO CAMPOS:

Thank you. Thank you for having me here.

BROOKE GLADSTONE:

So you're a patient advocate. You're also a patient. So tell me about your own experience.

HUGO CAMPOS:

I have a relatively common type of cardiomyopathy called hypertrophic cardiomyopathy that puts me at risk of a sudden cardiac arrest.

BROOKE GLADSTONE:

When you hear about young athletes who die suddenly, that's what they have?

HUGO CAMPOS:

Right. And in 2007 I received an implantable cardiac defibrillator. It's a device that is placed in my chest to look at every heartbeat and determine whether I am having a, a dangerous rhythm that could put my life at risk and then deliver therapy, which is basically a shock. Nowadays these devices are quite sophisticated. It's incredible, the amount of data it collects.

BROOKE GLADSTONE:

So this measures your heart beat, fluids in your chest, things like that.

HUGO CAMPOS:

It collects data about the functioning of the heart and the clinical status of the patient, and this data is then transmitted wirelessly from the device itself that is implanted in my body to a bedside monitor. And then from there, through a telephone line, it's sent to the manufacturer of the device. The manufacturer then makes some of that data available to doctors, for them to manage the patients.

It also looks at its own functioning, right, to see if the devices are performing as they were engineered to perform.

BROOKE GLADSTONE:

You basically want the data that your doctor is getting, the clinically relevant data. Am I right about that?

HUGO CAMPOS:

I want more than that. I want all of the data that is collected. I have the device in my chest. It's part of me, it's part of who I am. The manufacturer has access to all of it, a doctor has access to most of it. And the patient, who is really the most important [LAUGHS] stakeholder here, has absolutely no access to this information or to any of this data.

BROOKE GLADSTONE:

Could you read it, if you had it?

HUGO CAMPOS:

I want to at least have the chance to take a look at it and see if I can make sense of it. This is the typical excuse I get from manufacturers. They say to me, oh, you wouldn't be able to understand this data, it's too complicated. And to them I say, you know, try me. Let me take a stab at this. You know, it's my body and it's my life.

And, you know, I have all these other devices that collect data about my body. I track my activity levels, I track my weight on a daily basis. I track my blood pressure with a device that I plug into my iPhone and my iPad.

BROOKE GLADSTONE:

So you are a self-quantifier.

HUGO CAMPOS:

Yes. What I try to do is that I, I use a spreadsheet online that I, that I can access from my mobile devices. And so, whenever I feel an arrythmia, I try to gauge the intensity as it's perceived by me, I try to write a note on what I was doing. And this is how I found out that caffeine exacerbates my cardiac arrythmia. So I've stopped drinking coffee.

BROOKE GLADSTONE:

And whiskey.

HUGO CAMPOS:

And whiskey, right. Alcohol is a trigger for cardiac arrythmias.

BROOKE GLADSTONE:

Mm-hmm [AFFIRMATIVE].

HUGO CAMPOS:

And I seemed to be just ignoring this fact. And the moment I decided to pay more attention to it and be more self aware, it became clear [LAUGHS] that Scotch whiskey  was awful for me. And this was all based on my self-observation. And that's why data would be useful to me.

BROOKE GLADSTONE:

Given the importance of data, I found it interesting that you chose to reject the manufacturer’s remote monitor, the one that collects and transmits data both back to the manufacturer and then onto the doctor. Aren't you risking your own health, if you deny your doctor the opportunity to monitor?

HUGO CAMPOS:

Yes, I am risking my own health, to make a political point. The data that is collected from my device is part of my health information, and my right as a patient is to have access to my health information.

So I've taken the stance to say, I will not be monitored remotely, if I'm not made a part of this data loop. If there is a problem, it will only be picked up when I go into the doctor's office every 6 to 12 months. So I'm — I'm running a small risk, but it is — it is a risk I'm willing to take.

BROOKE GLADSTONE:

So what have you tried to do to get this information?

HUGO CAMPOS:

It's been a tough road because I have encountered resistance in every front. Obviously, the first step is to try to work with the manufacturers of these devices. The excuse they use has been that they're not in the business of providing data; they're in the business of providing lifesaving therapy.

BROOKE GLADSTONE:

Those are the shocks that get your heart back in rhythm.

HUGO CAMPOS:

Right, that's right. So I figured that the second step for me would be perhaps to approached government and see if the FDA would mandate these companies to release patient data to the patient. And the FDA has responded to me by saying that they do not regulate the data that is collected and stored by manufacturers of these devices.

BROOKE GLADSTONE:

That must have been reassuring: that's not my department.

HUGO CAMPOS:

Right. [LAUGHS] But they did bring it up to Advomad, and Advomad was —

[OVERTALK]

BROOKE GLADSTONE:

The trade association for the makers of these devices.

HUGO CAMPOS:

Right. And the response was that as a group they have no fundamental objection to providing patients with diagnostic data. But from having no fundamental [LAUGHS] objection to it to actually doing something about it, we — we [LAUGHS] still have a lot of work to do.

BROOKE GLADSTONE:

You even considered hacking into your device.

HUGO CAMPOS:

One of the thoughts that I had would be to listen in to the transmission, and basically eavesdropping into my own phone call and copying the data as it is transmitted. I'm not an engineer and I haven't been able to figure this out on my own, but I'm actively looking for somebody who can help me figure this out.    

BROOKE GLADSTONE:

Why is this such an issue for you? I get the sense that you've got your health pretty well under control.

HUGO CAMPOS:

I feel like this is wrong. It's just something that is wrong. And it's not fair to do this to patients. Patients should be empowered to take care of their lives. We are perfectly competent to care for ourselves in every aspect our lives. We manage our careers, we manage our finances. Why is it any different with our healthcare? It doesn't make any sense.

BROOKE GLADSTONE:

Do you think that this is part of a broader trend?

HUGO CAMPOS:

There is a movement happening right now, It's the e-patient movement. And e-patients are defined by the Society for Participatory Medicine as people who are engaged, who are equipped and who are enabled. It's not the "e" as in email. It's not an "e" for electronic, although the technology has been probably the number one enabler of empowerment of patients. So there is a grassroots movement happening, a sort of like [LAUGHS] Occupy Health.

To me, I want access to every bit of information that is collected about my health. Although people are approaching this from different areas of personal interest, to me because I have an implantable device it is what is closest to my heart, I guess. [LAUGHS]

BROOKE GLADSTONE:

Don't tell me you've never said that before.

HUGO CAMPOS:

I try to avoid the puns, but —

[BROOKE LAUGHS]

— sometimes they're unavoidable. [LAUGHS]

BROOKE GLADSTONE:

Hugo, thank you very much.

HUGO CAMPOS:

Thank you.

BROOKE GLADSTONE:

Hugo Campos is a patient advocate and founder of the ICD User Group, a resource for patients with implantable defibrillators.

[ERMA FRANKLIN SINGING "PIECE OF MY HEART"]

Rest in peace, Etta James. This one's for you.

[“PIECE OF MY HEART” UP AND UNDER]

BOB GARFIELD:

That's it for this week’s show. On the Media was produced by Jamie York, Alex Goldman, PJ Vogt, Sarah Abdurrahman and Chris Neary, with more help from Liyna Anwar and Hannah Sheehan, and edited – by Brooke. Our technical director is Jennifer Munson. Our engineer this week was Dylan Keefe.

BROOKE GLADSTONE:

Katya Rogers is our senior producer. Ellen Horne is WNYCs senior director of National Programs. Bassist composer Ben Allison wrote our theme. You can listen to the program and find transcripts at Onthemedia.org. You can find us on Facebook or follow us on twitter. And you can email us at onthemedia@wnyc.org. And check out our new media scrutiny theater videos on our blog.

On the Media is produced by WNYC and distributed by NPR. I'm Brooke Gladstone.

BOB GARFIELD:

And I'm Bob Garfield.

[FUNDING CREDITS]