The Person at the Center

I’ve been doing this for a little while, and by “this,” I mean working in the technology sector.

I know the tech sector is taking it on the chin right now because of our addiction to mobile technology, or technology in general. Where is that technological compass pointing?

I think technology has yet to fully arrive in healthcare. Personal health technology can become a palliative component of care. We already have job insecurity and health insecurity. I think health data insecurity is coming next, and technology can play an important role in addressing it.

With Gliimpse, you don’t need every gory detail from a medical record. You just need a glimpse into your health.

Apple acquired the company in early 2016. I spent some time there with amazing people and colleagues, and then I went through a caregiving journey myself.

I want to give you a glimpse into Gliimpse. There’s a two-minute video that shows a real person using the product.

“My Gliimpse will always be there with the latest information whenever I need it. All this information is organized into categories, as you can see on the left.

“For the first time, I know my numbers. Here, I can keep an eye on things like my blood pressure, BMI and cholesterol over the past several years.

“If I click on ‘Outliers,’ which is my favorite, I can see things I should discuss with my doctor that could be affecting my health. With a single click, I can see the history.

“If I’m looking for something specific, like my LDL results, I can simply search for it. I can also add things that might be missing from my Gliimpse, like my chemotherapy treatment, and keep track of how I’m feeling before and during it.”

When Apple brought us in and spoke with several small companies, most of them pulled up their slide decks.

We never did.

We went straight into showing a live Gliimpse. What you just saw was a live Gliimpse, and the voice-over was my little sister, Tanya.

She received a stage four diagnosis in the spring of 2015, and she recently died. It’s still pretty fresh.

I’ve realized that my professional and personal lives have found an intersection.

When a company like Apple acquires you, it’s a red-letter day. Woohoo, I get to go to the beach and have a drink with a little umbrella in it.

But during the time my other sister, who is here in the audience, my wife and I cared for Tanya, I was building a new product for palliative care in my head.

When Tanya had her Gliimpse in her hand, whether it was on a mobile device or in the cloud, the technology itself didn’t really matter.

In the video, we compressed the process into about two minutes. In reality, it took roughly 15 minutes to collect eight years of information from CVS, Walgreens and Quest.

There is a regulatory framework that made that possible.

I want to talk a little about the past, a little about the present and perhaps the beginning of my next venture, the art of the possible. How can we help patients collect their information and use it in ways that give them a sense of security?

What was that drug? What was that pill? What was my lab result? I don’t know.

That uncertainty creates anxiety for the patient and for the caregiving team around them. In Tanya’s case, luckily, that team was her family.

But I’m getting ahead of myself.

Let me talk about the regulatory framework that has allowed something special to begin happening.

It goes back to the financial crisis of 2008. Shortly afterward, Congress enacted what you and I know as the American Recovery and Reinvestment Act, which led to another mandate called the HITECH Act.

HITECH provided funding for hospitals to begin digitizing medical information. As taxpayers, we spent about $40 billion digitizing records and technology across roughly 5,500 major hospitals in the United States.

The problem is that those systems are essentially billing systems. They are designed around charge capture and order entry because that is how the system gets paid.

I’m not criticizing them for that, but that isn’t healthcare. It isn’t what those of us in this room aspire to create.

There were requirements called Meaningful Use. We were giving hospitals taxpayer money, so they had to show that they were spending it on electronic health record systems, or EHRs, and using those systems meaningfully.

Meaningful Use came in three stages.

The first was: You have to start digitizing. Check.

The second was: You have to start sharing. Not so much.

The third was: You have to begin analyzing outcomes. You have to examine whether outcomes are improving, feed that information back into the system, close the loop and determine what is working and what isn’t.

One thing that emerged from this story is that healthcare technology is following banking technology.

In the old days, we had to visit a brick-and-mortar bank that was only open for a few hours. Then we got ATMs, which were available during the 23 hours the bank was closed. Then we got online banking. Now we have mobile banking, where you can take a picture of a check and deposit it into your account.

I think banking is about a decade ahead of healthcare.

But I’m excited because one result of Meaningful Use, the HITECH Act and that $40 billion investment was what you saw Tanya doing in the video.

She could log in and create accounts, much like you might have several different email accounts but use one reader to pull all of those messages into one place where they make sense.

Part of the HITECH Act required patient portals. Stanford, UCSF, Sutter and CPMC would each have a portal where you could create an account. Certain kinds of information would be sent to those portals, and Tanya could download it.

What you saw was Tanya releasing her information. This was live. It worked. It was not a demo or proof of concept. She actually used it.

She could take those coarse-grained medical documents and upload them to the cloud. Our software, which we called a chipper-shredder, broke them apart.

It recognized that “hemoglobin” in one record was the same as “HGB” or another abbreviation somewhere else, and then plotted those results over time.

Tanya could use that information and share it with her caregiving team.

There were two especially interesting examples.

Many of us have a professional profile on LinkedIn. It has a URL that we can email to anyone who needs to see it.

Tanya had something similar, a link to her Gliimpse. She was able to share it across state lines to receive a second opinion. A physician spent an entire hour reviewing the information.

Another time, she was receiving treatment at UCSF when the entire medical record system crashed. It was down for 36 hours.

But because we had shifted the definition of sharing information toward portability, Tanya carried her health information wherever she went.

She was able to spend 45 minutes with her oncologist, Hope Rugo. Even though the hospital system was down, they used her iPad to review all of her information.

This was four days before Tanya died. It was a Thursday. The intubation tubes had been removed, and we wanted to honor her wish to die without pain.

She was at Johns Hopkins. We had all grown up in the Maryland area. They adjusted her medications according to her wishes.

She seemed to know that we were around, but she had lost her voice. She didn’t have enough energy to push out the air needed to create sound. When she tried, it sounded more like the cooing of a little bird.

That was my sister.

She was more soul than body. She was always connected to the question, “How can I take care of you?”

When nurses came in and asked, “How are you feeling?” she would put her hand on them. It creeped them out.

I remember the first time she met her oncologist, Hope Rugo. Hope asked, “How are you doing?”

Tanya said, “You know, some of these days have been the best days of my life.”

Hope was so taken aback that she pushed the entire family out and closed the door. An hour and 45 minutes later, they were still talking.

I think we are at a moment when regulatory changes are encouraging and allowing patients to be at the center of accessing and controlling their health information.

They get to decide with whom they share it.

As the earlier panel said about organ donation, when Tanya was diagnosed, people came out of the woodwork and asked, “What can we do to help?”

There isn’t always much that people can do, but here is one thing.

Instead of participating in a cancer walk and donating money to the National Cancer Institute, which has plenty of money, perhaps you could collect your health information and donate that.

I think doing so could accelerate and compress the timeline for finding solutions to diseases like cancer.

I believe cancer is a data problem. Computers and the technology industry are very good at solving data problems. I’m not saying that simply because I work in the industry. I truly believe it.

One of the problems with research is that a study may be conducted and the publication appears three years later. That doesn’t help people who were diagnosed three years earlier.

Cancer can mutate every three months, or roughly every 100 days. Three years is simply too long.

If people can help collect, organize and share their information, we may be able to bring that research timeline closer to 100 days. Then we can go after cancer before it begins changing again.

These are examples of how technology can be palliative. I can feel better because I can answer questions with my caregiving team, and I can also pay that information forward to researchers.

I apologize for the profanity on this final slide, but this is how I felt. I wrote it the day after Tanya died.

I realized then that I wasn’t going to sit on a beach with my little drink and its tiny umbrella. I had to do something more.

Ciitizen was born about two hours after she died, and we are only getting started.

I promise that I am going to do my very best to kill cancer in my lifetime.

Thank you.