Patient Ownership of Data?

Photo by Ashley Batz on Unsplash

Do you care about health data ownership and want to stay abreast of national initiatives to wrestle with and solve ownership issues? If so, this post is for you.

What does it mean to own my health data? Is it like owning my car or my house? Is it like a copyright? Do I own it by myself or do I share ownership with the people or systems that enter the data (my doctor, the lab, my care partner) or store the data (the electronic health record, the app, the device)? Is it ownership or is it a right, like a civil right? I confess that I know this is important, even critical, but the more I explore, the less I feel like I understand.

Much to my surprise, I was invited to attend a National Academy of Medicine (NAM) Digital Learning Collaborative meeting about Patient Ownership of Data. Participants included stakeholders from EHR vendors, government agencies, hospital and medical practices, insurance companies, patients (I was one of several), and others. See a summary here. The meeting sought to explore several questions (paraphrased by me):

  1. Potential: If all health data could be available in a protected fashion for new insights, what might be the benefits for health care and health progress?
  2. Barriers: To what extent do uncertainties about data ownership and control slow down data use? How much do institutional competitive forces present an issue?
  3. Ownership implications: If individuals own their personal data, what access, control, and use protocols are necessary and how can the necessary infrastructure be supported?
  4. Strategies: What issues and strategies take priority to catalyze transformative change? What are the stakeholders’ responsibilities, how can they be mobilized?

Barbara Evans, Director, Center for Biotechnology and Law at the University of Houston, spoke about Ethical and Financial Implications of Patient Data Ownership. First, property law – data as property – is a creature of state law, not federal law – so 50 different views of property. Some issues Dr. Evans shared were that individual data ownership wouldn’t necessarily provide exclusive control – think taking property as in eminent domain and police power. Ownership could require administrative infrastructure and high transaction costs. Ownership does not ensure enduring rights.  – you can’t sit in your living room when you sell your house. And it doesn’t protect privacy and security – your house can still be robbed.

Thinking of data ownership as a civil right? That’s the right to consent to use of data, the right to security of that data, the right to be informed of its use. Read David Harlow’s article, Ownership vs Control of Your Health Data in Medium’s Tincture from someone who can describe these issues better than me.

I know enough to be dangerous in this arena. Whenever I feel like I’m over my head, I step back and think about what I do know. After listening to the wisdom of the esteemed experts at the NAM meeting, I piped in with what I need data to do for me:

I’m the child, Custodian and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. I want answers to my questions about what’s going on and how she’s doing when I have them.

Not discussed at the NAM meeting: Where can we find inspiration?  Is there an existing or proposed model that may be a beacon for us? See Reimagining Health Data Exchange: Enabled Roadmap for India published this month in the Journal of Medical Internet Research. India is looking at a system that leverages India’s near-universal mobile phone penetration, universal availability of unique ID systems, and evolving privacy and data protection laws. It builds on global best practices and promotes the adoption of human-centered design principles, data minimization, and open standard application programming interface (API)s.

So what now?  What have I learned?  What am I going to do from here? Well, I need to continue to build and share a profound understanding of data rights, ownership, and stewardship. I need to advocate for people at the center of care (patients, direct care clinicians, and the people that support them). I need to promote open source technology and human design that make access, control, quality, and use of health data possible. I’m grateful to the experts and the advocates who invest problem-solving time and energy.  We have much work to do.

Photo by Ashley Batz on Unsplash

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Danny van Leeuwen

About Danny van Leeuwen

Patient/Caregiver activist empowering people as they travel toward best health

6 Comments

  • Danny van Leeuwen says:

    Oh and send me the paper too.

  • Danny van Leeuwen says:

    Hey Talya. Great to hear your voice. Yes, how can data be of use? Unfortunately so much isn’t data I actually need to live my life. What works for me when I’m scared, in pain and what doesn’t? Am I getting better? Where do I get my questions answered at 2am? What does my urologist think of what my cardiologist prescribed? What if I just do nothing? What’s the next best thing if I can’t afford plan A?

  • Ellen Schultz says:

    Danny, you always raise do many good questions! That in itself is an important contribution and a gift.

  • Talya Miron-Shatz, PhD. says:

    Thank you, Danny. For me, a scientist who started out my medical decision making journey looking at comprehension of medical information, there are additional questions:
    – How can the data be of use?
    – How can we ensure comprehension, especially given low health literacy levels of sizeable portions of the population?
    – And, on a more ethical note – given the above – how do we avoid a situation where the medical system relieves itself of responsibility by saying ‘well, you have the data. Now it’s up to you to figure it out and act upon the implications’?
    I’ve a related talk, about big data and rendering it useful: https://www.youtube.com/watch?v=1BNt4mhpWXs
    and a paper on the topic, which I’m happy to share.

    As always, happy to engage in a dialogue,
    Talya

    • Danny van Leeuwen says:

      Talya, I watched your 2015 presentation. It’s really good. Clear. Useable. I wish I could see the slides. Hey, send me the slides in an editable format and I’ll try to overlay the slides with the mp4. I will add it as a resource on my website. I can use that little, old machine on the top of my neck.

Talk to me! Questions and comments solicited and welcome.

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