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PicnicHealth’s Gillian Hanson Pays It Forward to the Bleeding Disorder Community

Ron Sklar
June 2, 2020

“When you have a chronic condition—especially one that involves hospitalizations—you wind up spending a lot of time with healthcare providers,” says PicnicHealth’s Director of Data and Informatics, Gillian Hanson, “and they wind up being your mentors and the people you look up to.”

That’s one of the reasons why Gillian, who is also a naturopathic doctor by training, is such a good fit with PicnicHealth. 

“I have a lot of experience from the patient side,” she says, “because I have a bleeding disorder. It’s very similar to hemophilia. It’s called Von Willebrand disease. Yes, it’s a terrible name!” 

When she came on board to help create PicnicHealth, Gillian had real empathy for what patients go through when trying to obtain past medical records on their own. From personal experience, she completely understood that there had to be a better way. 

“The last thing you want to do at that time in your life is go through this rigmarole and to track down your records,” she says.

The goal then, was to make the problem of searching for medical information go away. Once that’s achieved, patients can use their time more wisely, to focus instead on their health and their families. The PicnicHealth objective was to give patients a bird’s eye view of their entire history—to make it easy for medical records to be stored, accurate and easy to review. 

A tall order, easier said than done. 

“When you get sick,” Gillian says, “you don’t want to spend your free time on the phone with a medical records office, fighting to get copies of your medical records. And it really is a fight. It’s a struggle. There are different requirements and hoops you have to jump through in order to get your records. Some require payment. Some require a copy of your driver’s license or other forms of identification. Sometimes it gets lost in the mail or it gets lost in their system, and you have to start all over again.”

Fortunately, as PicnicHealth was becoming a reality, the digital age was helping the medical records mess to untangle a bit—but just a bit.  The process of gathering medical records still wasn’t perfected. 

By 2014, website portals were becoming more present in physician offices. The zeitgeist in the industry was to allow patients more access to their medical records through these portals. However, the information available was usually limited to lab procedures or medication lists from a patient’s recent visit. The big medical history picture was still not a reality. 

“As we started the initial process of creating PicnicHealth, we were just pulling in information from portals,” Gillian says, “but what we realized really quickly was that only having a small subsection of information is not actually that useful when you are using your records to go to new providers or a new hospital, or to try to get an appointment with a specialist. The only way to do this is to have access to your entire record set. And the only way to get those is to actually request your records from the medical records office. The portal was just not sufficient.”

Thus began another mountain to climb: requesting records, one by one, office by office. Gillian certainly had a lot of experience doing this in her private practice, but not at a scale this big. It took a few years and a lot of contact with healthcare facilities and record offices, but the process was at last built out. 

The next step was to standardize requests for medical records so that it would be a consistently easier process to acquire them. 

Of course, this was a monumental task, but it was still only half the job. The next phase was to take the records and organize them into data sets. Having a stack of thousand pages of medical records will do nobody any good; searching for specific patient information would be like trying to find a needle in a haystack. 

“What we started doing—and still do—is divide up this information into individual healthcare encounters,” Gillian says. “It’s what we call ‘structuring’ the information. So specific pieces of data about each visit can be displayed on a timeline for users so they can sort and filter the info in a more user-friendly way.”

What was needed was a training data set, in which the gathered information was split into different categories for easy access (for instance: doctor visits, providers, facilities, medications, vital signs, lab reports). Then the machine learning takes over, forming an algorithm that can predict where all kinds of information will show up in those stacks of records. 

Sounds tiresome? Luckily, Gillian is a self-professed data nerd. She was clearly in her element. 

“This is the kind of thing that I love doing,” she says of collecting and separating data. “It's kind of like reading your favorite book over and over and never getting tired of it.”

She also kept her eyes on the prize. 

“It’s not just building a machine,” she says. “It’s genuinely impacting people’s lives.”

When it comes to using this data for research purposes, there was one constant that was non-negotiable: patient confidentiality and privacy. The extracted information never contains any identifying information. Each piece of data is assigned a code and stored separately from the original patient records. 

As a result, a patient cannot be identified and associated with the information being studied. This allows the information to be combined together with the de-identified data of other patients. All of it is used securely and privately, for research purposes only. And not traced back to the patient. 

“We don’t want to do anything secretively,” Gillian says. “And we want—and always wanted—the patient to be at the center of this experience. We started this company for patients to alleviate a problem that they were experiencing. The patient has to remain at the center.” 

An unexpected result of these patient-centered goals: building communities. 

Cohorts of people from different disease communities began signing up for PicnicHealth. This helped build the record collection, which in turned helped the research. As a result, what can be seen are some consistent themes among patient experiences, as well as some interesting differences. 

Some people had as many of fifty years of medical records on their timeline, allowing Gillian to note how the disease progressed throughout a lifetime. This includes all the different drugs, treatments, and therapies that went along with the experience (and when). This “longitudinal health journey” allowed for a longer-term view of the disease and a better understanding of how it was handled. As a result, patterns emerged. 

“People had this thirst for research to better hear their story,” Gillian says. “There now seemed to be a safe and secure way for research [to be gathered and studied], so that people could better understand their disease and their journey.”

It was like walking into a dark room and turning on a light. 

For Gillian, her PicnicHealth experience has brought her around to her own beginnings, with her first diagnosis. 

“We’re currently doing a lot of work with hemophilia, I’m excited to say, so it’s coming back full circle,” she says. “I’m able to give back to the community that has given so much to me, and who made me feel that I wasn’t alone, that it was possible to manage this disease. People are able to live full and rich lives by having [medical records] be something in the background as opposed to—when you’re diagnosed—front and center. It’s a daily experience, so these communities have been really helpful for me to help me navigate that journey of diagnosis. Now it’s just another condition that lives in the background for me.”

Another unexpected benefit from the gathering of communities: 

“It’s a chance for more voices to be heard,” Gillian says. “Most people in my experience do want to participate in research. They do want to make sure that their voices and story are heard and yet they may not be able to participate in a research trial. This is a way for them to contribute and make sure that their story, their disease journey, is heard without putting such great demands on them.”

Visit to sign up for a free PicnicHealth account if you too have hemophilia and would like to contribute to research.


Ron Sklar

Ron Sklar is a business content writer based in New York. He writes for clients in a number of sectors, including real estate, healthcare, financial services, tech, and transportation/automotive.

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Patient Stories | Patient Blog
Patient Stories
July 19, 2022

5 Tips for Better Doctor's Visits with PNH

Living with a rare disease brings you to a doctor’s office more than the average person. To make the most of your time with your doctor, it is important to be prepared, listen, and speak up in order to build rapport with them. Here are my five tips to help you do this and improve your next doctor’s visit:Take notes. When talking to a doctor, it is easy to nod and agree with everything they are saying. It may all make sense at that moment, but the second you leave the office, so much information is forgotten. Taking notes on your phone or in a notebook helps ensure you have all the information to look back on if you forget what is discussed.Organize and keep track of your medical records. Having your records and imaging readily available, especially if you are seeing a new doctor, is extremely helpful not only for the doctor, but also yourself. Doctors will want to review your history, but you yourself may want to review your records to mark down how you physically feel and compare them to the actual testing. Programs like PicnicHealth’s Timeline make it easy to integrate your medical records between all your doctors (PNH-related or not), hospital visits, lab work, etc., and keep them readily available in one place.Keep a running list of questions between appointments. Whenever a question pops into your head, write it down! Bring that list to your appointment in whatever form is easiest for you; write them out, keep them stored on your phone, or even print them out so you can write the answers next to each question as you ask your doctor. Listen to your doctor, but remember you do not have to be a silent participant. Try to make sure appointments feel like a discussion rather than a one-sided lecture. Don’t forget, it’s your health, and no one knows your story better than you do.Stay informed. You are your best advocate, staying informed about PNH news is a great way to understand the disease and any opportunities you might have for new treatments. There are also low-effort ways to participate in PNH research with observational research studies. PicnicHealth is a great platform for both understanding your medical history and contributing to observational research.Don’t be intimated. Your doctor may have extensive education and multiple degrees, but don’t be nervous around them, they are humans too, and are there to help you. The more relaxed you are, the easier it is to open up and give them the information they need to give you the best care.

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About PicnicHealth

Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.

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Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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Build a support network.

If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.

You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets in-person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating the world of Alzheimer’s.


Stay organized.

If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.

You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets in-person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating the world of Alzheimer’s.


Plan for the future.

It isn’t always easy to look into the future with Alzheimer’s—but doing the legwork now will save you from stress later. If your loved one is in the early stages of illness, you can involve them in conversations about legal, financial, and long-term care planning decisions. Despite the difficulty of these topics, you’ll all feel empowered by facing them early, and you can move ahead with greater confidence.


Explore treatments and clinical trials.

It’s an exciting time for Alzheimer’s research, with new treatments in development and coming to market. Ask your loved one’s doctors about therapies they can try or clinical trials they can join. One easy way to participate in research is to sign up at PicnicHealth, which helps to advance Alzheimer’s science by sharing participants’ anonymous health data with some of the brightest minds in research.


Make time for self-care

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one with Alzheimer’s. And don’t forget to keep a sense of humor along the way.

Having trouble managing your loved one's medical records?

Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.

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LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.

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Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

Learn more about contributing to IgAN research with PicnicHealth. 

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Save The Top-10 List

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Keep an Eye on These Test Results

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