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8 Building Blocks for Constructing Good Data

Disease surveillance, asymptomatic, long-term outcomes, health disparities and many more terms have stepped outside of the public health and life sciences research realms and into our everyday kitchen table and grocery store line conversations. Over the past year while we waited for results from randomized control trials for vaccines to SARS-CoV-2 and novel treatments for COVID-19; many of our day to day discoveries and learnings - especially those that guide behavior changes - came from real-world data, ad hoc integration of multiple data sources, and real-time data analytics.

What are Real-World Data and Evidence?

The US FDA defines real-world data (RWD) as “data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources” and real-world evidence (RWE) as “the clinical evidence regarding the usage and potential benefits or risks of a medical product derived from analysis of RWD”. RWD play an increasingly important role in clinical research and healthcare decision making, defining the natural history of diseases, and providing information on the efficacy and safety of treatments in the real-world, especially in populations typically excluded from randomized control trials - diverse racial and socioeconomic populations, the elderly, and patients with comorbidities. 


As we think back to how COVID and RWD have intruded on our everyday lives, so grows the discussions of data quality and the need for fit-for-purpose data. Have you asked yourself, “why aren’t they reporting race and gender with infection numbers” only to discover your local government didn’t request these variables to be collected? “Why doesn’t my doctor know that I was vaccinated?” only to discover that the mass vaccination site run by your health system was not integrated with your doctor’s office’s records system. To say the least, the COVID pandemic has laid bare that many single sources of data are lacking and data obtained for clinical care is often not fit for research as initially collected.


“Evidence will inevitably be limited by the quality of the underlying data”

RWD has the potential to inform novel drug discoveries, new regulatory approvals and labeling expansions, payers conversations, clinical decision support, and much more, but the RWE generated will inevitably be limited by the quality of the underlying data.


Much like in traditional clinical research studies, in RWD studies intention is important and understanding the research questions drive the variables of interest - in reality the data model and the data that’s collected have to fit the purpose of the research study. But in addition to specifying the right variables, it is critically important to access or source complete information. 


We believe that the best way to capture a patient's complete medical journey is to go straight to the patient; so we’re centering on the patient and empowering them to own their own medical records. Rather than running away from dirty data, we work directly with patients to build higher-quality data by finding ways to improve data capture, organize medical records and enhance that data as needed with additional data types like patient-reported outcomes and claims data.

Building Blocks

PicnicHealth is on a mission to make medical data live up to its potential so that everyone within the healthcare ecosystem benefits - we are building ‘Good Data’


At PicnicHealth, good data is: 


  1. Complete for an individual patient
  2. Harmonized across sites of care and data sources
  3. Structured to be well-organized and formatted
  4. Patient-level for easy human review and analysis
  5. Transparent and documented with provenance and well-defined protocols
  6. Accurate or error-free and reliable
  7. Representative of the population of interest
  8. Accessible to patients, researchers, and other healthcare stakeholders


Each of these concepts contribute to the creation of high-quality, fit-for-purpose data. But how exactly do we achieve good data? What metrics are we tracking and how do we know when we’re done? 


We’re beginning a series: “Good Data Is”, where we’ll take a look at how to build good data and explore how best to optimize data capture, transformation and patient engagement by expanding on each of the key elements of good data. 


Follow along and join our discussion on LinkedIn and Twitter.

Want to know how everything begins? Read how PicnicHealth Generates Real-World Data from Medical Records.

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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1

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.

2

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.

3

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.

4

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.

5

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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25,966

patients onboarded to platform

1,427,368

medical visits processed

56,861

facilities provided medical records

255,101

healthcare providers

95+

research programs

12

published posters and manuscripts

10

partnerships withtop 30 pharma

New Research

Discover how PicnicHealth data powered medical research in 2021

Keeping Patients at the Center

This year, experts from PicnicHealth joined podcasts, webisodes, virtual summits and much more to speak to the importance of patient-centric approaches when building complete, deep real-world datasets.

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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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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