Frequently Asked Questions

What is the goal of HealthDataRights.org?

HealthDataRights.org is home to our Declaration of Health Data Rights, and serves as the portal for those who wish to endorse and support these rights.

We have the right to access all health data about ourselves, so we can make the most effective health decisions using the resources we feel are most appropriate. Having and understanding one’s health data is as crucial to lifestyle decision-making as accessing one’s bank account. Our goal is to make these concepts an everyday reality.

If we collectively assert our health data rights, we’ll impact care, engagement, quality, errors, outcomes, and meaning; we’ll move our current unaffordable and dysfunctional health system to one that more effectively serves patients by allowing them to have the information they need to fully participate. We believe that this flow of information will drive more engaged patients, better health decisions, lower costs, and better medicine.

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Why is a Declaration of Health Data Rights important, and why now?

We live in an era of connectivity, social media, and instantaneous access to information across the globe. However, people still have difficulty obtaining their own health and medical information from doctors, hospitals, health plans, and other medical sources. A major barrier has been the fact that the data is not in electronic form; even now, in the 21st century, only 15% of physicians in the U.S. maintain their patients’ records electronically (e.g., electronic health records). There are also psychological barriers. For example, there are physicians who believe that patients cannot understand complexities involved in decisions about their health; there are patients who hesitate to question the authority of their providers by requesting the data that underlies their health issues. Despite these barriers, there is a growing number of empowered patients that has begun to demonstrate that understanding their data and being actively involved in the decision-making process – whether that means getting second opinions, changing providers, researching alternative medications, or just tracking the longitudinal course of their disease over time – can lead to improved quality of life and significantly reduce healthcare costs.

We believe, largely because people’s right to their own health data in computable form isn’t acknowledged, we are facing a crisis in the healthcare system right now which only the easy flow of computable data and true patient engagement in their own health can avert. We further believe that we are now at an inflection point where the country is acknowledging this issue and pondering what is to be done to avert a worse crisis.

The organizers of HealthDataRights.org felt it was important to create a Declaration of these obvious and inalienable rights, and to seek the endorsement of these rights by anyone who chooses to do so. It our hope that that policy makers, legislators, health care professionals, and health care administrators will listen to this message, and change their attitudes about how health data are managed, respecting the rights of people to immediate access to their own health data. We believe this should be the basis of everyday health care.

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Who are the organizers of this effort? Is there a political or economic agenda behind the effort?

The organizers of HealthDataRights.org include doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others who share a common goal of greater health data availability. Many of us have personal and family experiences with the health care system that have convinced us that more openness and accessibility to health data about ourselves or loved ones leads to better, safer, and more effective care. Some of us have seen clearly how restrictions on health data and medical records can lead to great pain and suffering—needlessly, in most cases. There is no specific political or economic agenda or affiliation. This is about people becoming more engaged in their wellness and health, and about the notion that access to one’s own health data can be empowering.

The group is growing and can be seen in the blog roll where individuals share their views on the impact and meaning of these rights, and in the endorsers list.

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How did HealthDataRights.org get started? Who is involved?

Everyone who wants to be involved can be—whether its by officially endorsing the Declaration, submitting a blog, reading your rights aloud on YouTube, or following us on Twitter.

This is really a movement to declare our right to have and share health data. It was initiated by conversations between friends and colleagues who were worried about health care IT and reform. The order of endorsements on the site (for the first 12 or so) represent the individuals who were part of the actual conversations and committed to draft and unveil the rights. On June 12, 2009, a working group of individuals, including Adam Bosworth, Jamie Heywood, David C. Kibbe, Gilles Frydman, Alan Greene, and Sarah Greene, began drafting the Declaration and reaching out to others for feedback and improvement. By launch on June 22, 2009, there was a group of 100+individuals from many sectors and industries reviewing, endorsing, and finalizing the Declaration of Health Rights. The initial drafters and consultants included patients advocates, caregivers, health care providers, IT and policy experts, and entrepreneurs, all of whom are working to put patients’ interests at the forefront of all fixes to the current broken healthcare system.

There is no individual author as this was, and continues to be, a truly a collaborative process.

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What about privacy and the HIPAA laws? Is HealthDataRights.org in favor of strong privacy protections?

There is nothing in the Declaration of Health Data Rights that contravenes or opposes the need for strong privacy protections for health data and information. We are strong supporters of health data privacy and security. At the same time, we know that too often “privacy” is used as an inappropriate excuse to keep people from gaining access to their own health data and information, which they have every right under HIPAA and most state laws to view and access. This incorrect interpretation of HIPAA then becomes an abuse of the very rights that HIPAA seeks to protect, namely the individual’s right to a copy of his or her entire medical records, in electronic and computable format if available in that format.

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How is this different from what’s already in HIPAA, ARRA or stated elsewhere?

This is a simple, clear, direct one page document created to help individual people. Doctor’s offices, labs, health plans, and hospitals, etc. can read it, understand it, endorse it, and begin acting like this today. We hope to see a “We support Health Data Rights” sign in every healthcare location, not just in America, not just in the developed world, but globally—until access to health data has become an everyday reality. Unlike HIPAA this calls out that we have the right to our data whereever it resides such as laboratories, pharmacies, or health plans and in computable form. The American Recovery and Reinvestment Act does grant the rights to electronic data asserted in our Declaration of Health Data Rights (see Section 13405(e) of ARRA) from covered entities, including health plans and providers. However, it does not grant the right for the patient to get the data directly from labs, which we would see as included in this Declaration.

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Can I really share their information with anyone I want? Doesn’t this conflict with HIPAA or other regulations?

HIPAA only deals with health data that are controlled by a “covered entity” – for example, providers or insurance companies. Once you obtain a copy of that data (which HIPAA explicitly permits), you are free to use it exactly as you see fit. We do this every day already, such as when we show our X-ray to the doctor next door, or post it on Facebook because it looks interesting. We are not aware of any existing regulation that would abridge this fundamental human right; establishing this Declaration is an attempt to ensure that none are ever created.

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Does this Declaration suggest people should have exclusive rights to their data?

No, we are not suggesting that, although this is a thorny issue. Doctors need accurate information about their patients and are required by law to maintain this information. Labs are required to hold onto their test results for up to seven years. There are also health care organizations that use their patients’ or members’ data to suggest improvements to the care delivered to them, usually with a blanket permission signed by the patient at the initial visit and later forgotten. This is not necessarily a bad thing and may be very beneficial for patients, even though permission is not sought for each particular instance of that use. In addition, aggregated and anonymized, population data obviously is key to learning what is working for whom, what is cost effective for whom, and what is the best way to treat any condition for whom. We are supportive of organizations that are endeavoring to improve public health by learning from population data. An “exclusive right” could be read as contradictory to that. What we do affirm, strongly, is that people do have a right to their own data.

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What do you mean by ‘minimal cost’?

We expect a lively debate about this. In general, this information has been paid for and shouldn’t cost anything to deliver electronically. At a maximum, one could reasonably expect a fee that doesn’t exceed an ATM fee which, after all, has to include not only the cost of the electronic transfer, but the card reading, the rental of the space for the ATM, and so on.

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What does the word ‘computable’ mean?

Data in a computable format means that its contents can be understood and acted upon by a computer software program. Data on the Internet is increasingly in the form of electronic standards, such as XML (Extensible Markup Language), that allows sharing between computer systems and some action or actions to take place without human data entry being necessary. Both the CCR (Continuity of Care Record) standard and the CDA CCD (Clinical Document Architecture) are examples of computable health data standards that have the ability allow computers to exchange the information and compute – that is, understand and take an action – with it. We call this out in the Declaration because we believe that people ought not have to re-enter their data from paper forms or from text documents online, when the data are in computable format in the doctors’ EHR or the hospitals’ IS system. For example, if a patient’s prescribed medications can be automatically assessed to determine if there are potential risky interactions, then that data is computable.

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What are the implications for research?

Most patients want as much research as possible to be carried out to help find effective treatments to improve their outcomes; they naturally assume that researchers have good access to databases of information and share data in vast patient registries to draw their conclusions. Sadly this isn’t the case. Because of different standards across research institutions and the low uptake of electronic notes, registries are often fragmented, out of date, and totally unoptimized for collaboration. If patients themselves had full access to their records, they would be able to ensure that the best researchers in the world had access to their current medical data; those patients would know that their health data formed part of the ammunition in the fight against their disease.

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Will this be an unfair burden to the health care professional?

There are no requirements in this Declaration that are not already in HIPAA. That said, we need to help physicians get data from wherever it is located, and find ways to provide the data to their patients that don’t cost a lot of money, and aren’t a great deal of hassle. There should be help for the health care providers who understand how valuable this can be for quality of care. One of the reasons the CCR standard was created in the first place was to make it possible to organize and summarize relevant health data for each patient, so that doctors and patients would have a means of efficiently making health information portable. Copies of paper notes contain a lot of extraneous and completely useless data, often gathered in haste, and poorly organized.

It should be an explicit duty of physicians and health care organizations, to keep a patient’s relevant health data accurate, up to date, and summarized in an organized manner. That this can be done with the CCR standard, which also allows for the data to be structured in XML and approaching computability, is also important and one of the means to accomplish this.

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Should people consult an expert before getting access to their health data?

People can always choose to consult experts before getting information that may affect their lives, whether it is about their finances, their health, or their work life. However, they should be free to choose whether they want consultation, who provides it, where and how they get it, and what they pay for it. Tying consulting to testing would be like declaring a bank teller cannot give you your balance unless you accept that bank as your financial planner.

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Who is funding HealthDataRights.org?

HealthDataRights.org is entirely volunteer and has no corporate sponsor. The total hard costs to launch and market the website was $1000, which were shared among initial endorsers. The work done to build, design, copywrite, and promote HealthDataRights.org was donated by @joe_lind, @doctorzaius, @kbrigham and @LPscanlon.

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How can patients and others get involved?

You can Endorse This right here on www.HealthDataRights.org. You can also officially endorse the Declaration by entering the hash code #myhealthdata on Twitter. To follow HealthDataRights.org, you can check out our Facebook page, and you can also submit a video of yourself (or a group of you) reading the rights aloud to our YouTube page.

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