C4 Innovations

Community & Behavioral Health | Recovery | Social Change

Protecting Privacy for People in Recovery

An episode of “Changing the Conversation” podcast

Danielle Tarino and host Kristen Harper discuss issues of privacy and disclosure for people in recovery from substance use disorder.

May 31, 2021

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Kristen Harper, Host: [00:05] Hello. Welcome to Changing the Conversation. I’m your host today, Kristen Harper, recovery specialist with C4 Innovations and woman in long-term recovery. Our topic today is Ethics 2.0. I am beyond excited about our guest today. We are joined by Danielle Tarino, long-time patient privacy rights and ethics activist. Welcome, Danielle.

Danielle Tarino, Guest: [00:28] Thank you, Kristen. Thank you so much for having me today.

Kristen: [00:31] I don’t want to sound like a stalker or anything, but I have followed your work over the past almost 10 years now, and I have to say that some of your passion projects throughout your time at SAMHSA, and then moving into other roles nationally, have really inspired me to pay more attention to my rights as a patient. But also as a woman in recovery, who often gets asked to share her personal experience with the recovery process.

Kristen: [1:00] So I started thinking way back, when was the first time I met Danielle? And I think we’re getting kind of old, and I have to say it was probably around 2012, in DC, which is a pretty long time ago. It was one of the events that the Higher Education Center hosted for collegiate recovery, and I believe you were a panelist. At the time, you were asked to be a panelist as a young person who had gone through a collegiate recovery program. And I believe you were working or just started working at SAMHSA, just graduated from Rutgers.

Kristen: [1:30] And I’m curious, that panel has always stuck out in my mind as being one of the first that I really, really enjoyed listening to, from a student perspective. But I’m curious now, so many years later, if you had the opportunity to go back and give yourself some advice, what would that be and why?

Danielle: [1:49] We are getting old. I can’t believe it was that long ago. I would absolutely have handled things differently and give advice to my former self now. And it would probably go something like this. Get some post-master’s training or other training about how you speak and how you express yourself.

Danielle: [2:08] I would tell myself to be more careful about the types of stories and things that I became willing to share in public forums, without recognizing the potential unintended consequences of sharing those things, whether it had to do with my career, or my security clearance with the government, or my family, and my parents and my grandparents learning about things that maybe was not healthy for them to have found out in that forum. Because I wasn’t speaking at a mutual support meeting, I was speaking at a government meeting. And I oftentimes, specifically in my earlier advocacy career, was unable to separate those two things as being different venues.

Danielle: [2:50] And I think also I should have been… Not should have. I don’t like to say things like should, because that’s a value proposition. I wish I had gotten training or had supportive adults in the room, who would have protected me more in the way of… And it’s not their fault by any stretch of the imagination. I don’t think any of us realize the level of exploitation that was happening, that we were given token seats at the table, and became show ponies for the young people in recovery, American recovery movement. And that there were people who did intervene to try to protect me. And I didn’t have the ability back then, to separate my 15 minutes of fame from considering the long-term consequences on my adult life.

Kristen: [3:41] I share a lot of that experience, having gotten into recovery myself at 21. And just being completely in love with being in recovery and wanting to shout it from the mountaintops. Anytime I had the opportunity early on to speak, I was like, “Absolutely, yes. We’re going to do this, and we’re going to change the world.” And now in retrospect, I completely agree that there was definitely some I wishes there in there as well.

Kristen: [4:07] Is that experience, and so many of your other experiences growing up in public, so to speak, as somebody that has been out about your recovery, and gosh, you’re even in a documentary, The Anonymous People, along with a few other larger profiled events and media publications, was that some of the inspiration for your recent publication with Bill Stauffer and William White, on William White’s blog, about the ethics of self-disclosure? Can you talk to me a little bit about the inspiration for all of you, for that series?

Danielle: [4:42] Absolutely. And I’m so glad that you’re bringing that up. That experience and the series of experiences, including those in The Anonymous People, those experiences all, I think led up to the moment where in my academic life, ethics and bioethics is a part of my academic discipline. And the cross-section between this idea of coming out publicly about a medical problem, because we talk about addiction and the opioid epidemic and the drug epidemic, some sort of a sensationalized media perspective.

Danielle: [5:19] But really what it’s about, is about coming out publicly about suffering from a chronic long-term disease or condition. And that’s different than talking about, and also admitting to the fact that I’ve had participation in criminal activity. And my privilege in my life has allowed me to use that as a way to move forward. And that is not going to be the experience of majority of Americans, who are going to come forward about these things and admit to criminality, for lack of a better term.

Danielle: [5:54] Yeah, so I think all of that combines together to why Bill, Bill and I decided to write this piece, that we have seen a lot of unfortunate things happen in this field. Exploitation of people. People re-initiating youth, and dying from the pressure that’s caused by being in the public eye, and not being given the proper resources. To an extent, moments where we very accidentally perpetuate stigma, because we’re operating on this idea as we preach to the pulpit, which is usually what we’re doing when we’re participating in these public forums. That everyone, including the American public around us, understand the language that we use and the experiences that we’ve had, when they do not. And that we’re actually experiencing a medical illness to an extent. And that the American public also doesn’t quite understand the neurological elements of suffering from a substance use disorder.

Danielle: [6:50] And that big combination of all of those things is why we decided to write this paper. And noticing that 20 years into the modern American recovery movement, we’re celebrating the St Paul’s on its 20-year anniversary this year. We haven’t talked enough about this, and about the communities that got left behind in the public open forum conversations.

Kristen: [7:15] Yeah. I was going to actually follow up with a question. As a privileged white young woman who got into recovery at 21, my experience through the recovery process has been very different than some of my very dear friends from different racial and ethnic backgrounds. And I really feel like that, unfortunately, during the past year with this second wave of focus on racial disparity and white supremacy, and really how the recovery community has dropped the ball in so many ways, when it comes to tokenizing and not lifting up leadership from a variety of different backgrounds.

Kristen: [8:03] I think that that also plays into what you and Bill and Bill write about, and the ethics that we talk about, is that I have used my status as a privileged white woman comfortably as an outed recovery person. That’s not the same experience for some of our other community members.

Danielle: [8:21] Absolutely. And at the time when I began my public-facing career, honestly, I didn’t have the ability to understand that. And was being touted as this exceptional story, when really the problem was all of the exceptional stories of young people in recovery looked similar. We looked very similar, racially and otherwise. And from the perspective of many of us, were the products of collegiate recovery communities, which in and of itself infers that I had access to a four-year institution and to an education and to, thank God, services that existed on the Rutgers campus for 30 years, prior to me getting there, that really didn’t exist in other places.

Danielle: [9:09] And I remember testifying on the Hill, one of the times that I had testified on the Hill. And I was listening to the stories before me, and I had a slide deck from which I was supposed to speak off of, because I’m a government employee and that was my job. And I felt sick to my stomach that I was about to tell the same story again, with statistics that have nothing to do with me, or what was truly not special, but an exceptional story, because my experience was really one in a billion.

Danielle: [9:40] I was in the right place at the right time, and got handed a card of luck, in combination with the privilege that I already had. And that we had to stop telling this story. So I got up in front of this congressional panel. And I say, “I know you’re expecting me to read off of my slides today, and I’m not going to do it, because I’m tired of telling this story.” I’d snapped in front of Congress, basically. That I was tired of telling the same story over and over, because we were missing the point. That it wasn’t about an exceptional story of a 19-year-old girl who was in the right place at the right time, with access to a four-year institution and healthcare. That wasn’t the story we needed to be telling anymore.
Danielle: [10:24] And I told the story of others that I knew, very carefully. And talked a little bit about the statistics that didn’t even really matter in the conversation. And I think that was a monumental moment in my life, where I just felt like I was sitting in the same room, listening to the same conversation about the same people for a decade. And we weren’t moving the needle, because we were unable to stop telling our own stories and tell the story of the community as a whole.

Kristen: [10:52] Thank you so much for just putting the information out there, in any way that we can, especially with the articles that you and the Bills have written. I wanted to close out this section with a quote from the first article from the series. You all write, “Ethical decision-making within our service and advocacy activities is an assessment of the ratio of potential benefits to potential harms in any course of action, with a particular emphasis on first, do no harm.” And I think that that first, do no harm, I almost want to just tattoo it to my arm, so that I can constantly remind myself that that is the most basic goal possible as an advocate.

Kristen: [11:38] But let’s transition over to one of my favorite conversations to have actually, where I try to make myself sound smart. But talking to you as one of the experts for Part 2, I’m going to sound really dumb. So I’m going to you to explain it to our listeners. So Part 2 of 42 CFR. What in the world is it?

Danielle: [12:01] Great question. I love this topic, and thank you for bringing it up. It’s important. So 42 CFR Part 2, or what our field terms as Part 2, is a privacy law. A very misunderstood privacy law. And I think before I get into the details of Part 2, which is extremely controversial topic in our field, and in the health policy arena in general, is to emphasize the importance of with or without Part 2, and the changes that are going to be proposed, and the controversy that exists in our space about the technical and tactical aspects of what Part 2 does in the medical system. That underlying all of that is the ethical principle of do no harm, through privacy and the protection of patient rights and civil rights. And whether or not Part 2 stays or goes, we have an obligation as a field to ensure that we are protecting people’s civil rights and their medical records, by way of protecting those rights.

Danielle: [13:03] So I’ll step off of the soap box for now, and then talk about what is this misunderstood law, Part 2. So it does a lot of things. But I’m going to talk about a few of the key things that are important specifically to patients and their civil rights. And they are, there’s a requirement in certain types of substance use disorder treatment centers and facilities, to require patient consent before sharing that substance use disorder, medical record, or information with anyone else, regardless of who that anyone else is.

Danielle: [13:32] And that it attempts to prevent, ideally, the unlawful sharing of information without consent, whether it’s to other doctors, family members, or law enforcement. And it protects patient’s records from being used against them in civil and criminal proceedings, unless there is evidence in the record itself that a serious crime has been committed. Meaning that I will not fundamentally, that by way of seeking treatment… Which is hard for us. 95% of us do not perceive the need to get treatment for our substance use disorder, because of the way that this disorder operates neurologically.

Danielle: [14:11] So I’ve made a decision, or maybe it was made for me, to seek treatment. And now that very record for that difficult decision that I had to make was going to be used against me in the court of law. So Part 2 is to prevent that phenomenon from happening.

Kristen: [14:28] So basically, on top of the stigma that we already have with substance use disorder and addiction, if we think that our health information that we’re giving away through a treatment process is going to make it into criminal justice systems, or any other kind of maybe child welfare systems, then we are going to be so much less likely to seek treatment for our substance use disorder. And so Part 2 plays a big role in that.

Danielle: [14:54] Absolutely. And especially in terms of people who are on medicine to treat their substance use disorders, and the stigma that is connected to that. People staying on their medicine, and participating fully with their practitioner, and the prescribing of that medicine is really important. And if I don’t believe that my rights are going to be protected, why would I seek that type of treatment either?

Danielle: [15:20] And so any type of, whether it’s medicine or psycho-neurological, or all the different forms of treatment. And while the law was promulgated in the 1972, in order to encourage people to go into treatment, so Part 2 is one of the oldest medical privacy protection laws on the books, if not the oldest. It pre-dates HIPAA by over 20 years. Because of the need to get people into treatment, even in 1972, was not lost on our government or on Congress, that people were not going to show up. And I don’t believe that we’ve moved the needle so much in our advocacy efforts to believe that here, in 2021 land, that there is no longer use for these types of rules.

Kristen: [16:06] A couple of years ago, I tried to apply for additional life insurance, after I had my first child. And one of the questions on the form to apply for that insurance, asked if I’d ever sought treatment and received treatment for a drug addiction. And it gave me pause, because I have been educated by my fellow recovery advocates. Why are they asking this question? Can they ask this question?

Kristen: [16:29] But it came to light through the process of applying for that insurance, that oftentimes, people are denied based on how they answer that question. Does this particular law have anything to do with services like that?

Danielle: [16:43] Unfortunately, this law does not, because it only goes as far as to protect the sharing of your information with your consent, from that place that you sought treatment. But to your point about what it means to share, to even make a disclosure that’s not being made by a treatment facility or a provider on your behalf, is that there is still an inherent risk to identifying ourselves as having the status of being a person who has, or had a substance use disorder. And that we will still be discriminated against life insurance, is a good example.

Danielle: [17:17] Absent essential health benefits, and some of the provisions from the Affordable Care Act, arguably even regular medical insurance was and would continue to discriminate against our diagnosis status, because we would be considered to be more expensive patients for a variety of reasons. And in insurance-payer land, we are numbers calculated by actuaries. We are not people. And so continued barriers to accessing fair healthcare and fair insurance is a problem.

Danielle: [17:46] And during my time at SAMHSA, I saw every case from “I’m going to lose my children,” to “I’m going to lose my estate,” to “There are police banging down the door of this substance use disorder facility to harass someone, and I can’t let them inside,” to even once a lawyer invoked 42 CFR Part 2 as a reason for not producing a record legally for a judge. And the judge held that lawyer in contempt of court, in a child custody case.

Danielle: [18:15] So there is a ripple effect of what happens, A, when the law isn’t known about and followed correctly. And B, when we are using people’s medical information against them for a variety of reasons. And really is a bioethical disaster, that my personal medical information would be used to purposely discriminate against me. It’s Big Brother on a whole other level.

Danielle: [18:40] And so ultimately, Part 2 doesn’t protect us from all of those other places in discrimination for a variety of reasons, which arguably in my mind, means that it’s not enough. And there’s a next level. There’s a next step coming towards not just medical privacy, but privacy in general, in the United States. And what does it mean to own my own data, specifically sensitive data, like my substance use disorder data?

Kristen: [19:06] Which probably got you interested in your next chapter that you’ve moved into, in the past recent years, with cybersecurity and your time at Georgetown, which I found really interesting. I actually read some of your thesis. Yes. That’s how big of a stalker I am. So can you tell us a little bit about this new area that you’re getting into with protecting people’s data, and why is that sexy? Why is that interesting? Why do we care about that?

Danielle: [19:36] Yeah, for the past few years, I have been fully making a career shift, or what I should say, a career in addition to my work in our field and in medical privacy and recovery advocacy. So in addition to my work in the field, I have been pursuing academically and in my career, and that helped to start a startup company where our primary focus is the protection of data.

Danielle: [20:06] We live in a time where hackers rule, where your data gets stolen by all of the big companies that you work with, likely multiple times a year. I think multiple times a year is a conservative estimate of the amount of times that our personal data is being recirculated to places that we did not authorize it to go, whether because it’s being stolen or because the proper regulations and checks and balances systems on the people collecting those data, don’t need to protect us, because not protecting us lines their pockets. You know what I mean?

Danielle: [20:38] And so I’ve become relatively obsessed in general, with this idea that data ownership should rest with the human beings whose data it is. But that is not the way our government looks at it. It’s not the way that the regulation system looks at it. And it’s certainly not the way that our foreign adversaries look at it. And so what does it mean to re-secure our own data, and have authority and be an actor in our own lives when it comes to those things we share?

Danielle: [21:08] What we choose to share on social media is fundamentally different than the types and amounts of data that is known about us, whether that be our internet activity, or through our medical information, actually. And so all these years working in medical privacy, led up to this moment of, well, what about national security and Homeland Security and general privacy protection, to protect those things that are at the core of what we do and what we are? Which is my information about me, is who I am. And you would have never needed to have known me, to know everything there is to know, based on my internet activity. Which is, to me, terrifying, but also empowering. And I hope one day we live in a world where if you want to use my data, you have to pay me for it.

Kristen: [21:57] Yeah. I feel really relieved to know that I have a sister in recovery that is at that gate, trying to protect us. It just reminds me of, again, going back to that first day we met, so many years ago in DC, and just being immediately impressed with this cool chick from New Jersey, who wasn’t afraid to share her mind. Now, just into this incredible watchdog for the rest of us who don’t completely understand what’s happening at the data level, but we trust to protect us. That’s pretty amazing, how far you’ve come.

Kristen: [22:33] I know last year was an incredibly challenging year for all of us, 2020, coming out of the pandemic. So many other things happening. I had a baby. I mean, a lot happened last year. What are you looking forward to for the rest of the year?

Danielle: [22:48] I am looking forward to hugging my dad. I am looking forward to having more conversations like this. Now that I’m an independent operator in this field, it allows me the opportunity to study and write about those things that I want to ethically, without being attached to a specific place. So I can hit it from a perspective where it won’t be as biased maybe, than it would’ve been. That excites me.

Danielle: [23:19] And also, I think that this pandemic has exposed just how broken… We already knew that, but just how broken our information exchange systems are. And that we really don’t have an integrated system of care in this country. And a lot of that is seated in the improper use and storage of data. That’s the perspective that I look at it from. And so maybe that exposure in and of itself, forces the powers that be to make changes and to invest in a future that is much more equitable.

Kristen: [23:54] Well, from sunny St. Petes, Florida. Thank you, Danielle, for joining us and sharing your incredible thoughts and insights with us. We really appreciate it.

Danielle: [24:04] Thank you so much for having me, Kristen.

Kristen: [24:06] And to our listeners, join us next time on Changing the Conversation.

Erika Simon, Producer: [24:10] Visit c4innovates.dot com and follow us on Twitter, Facebook, LinkedIn, and YouTube for more resources to grow your impact. Thank you for joining us. This episode was produced by Erika Simon and Christina Murphy. Our theme song was written and performed by Peter Hanlon. Join us next time on Changing the Conversation.

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