How Protected is Your Patient Data from Analytic Systems?

Even RSDSA will be using patient data to identify potential CRPS patients. Moreover, your patient data, called Personal Health Information, or PHI, and Personally Identifiable Information, or PII, is analyzed by your insurer, accountable care organizations, integrated care organizations and many others outside of your physician’s office.

By James Doulgeris, Chairman, RSDSA Advisory Committee

You probably have heard of HIPAA (The Health Insurance Portability and Accountability Act of 1996) and believe that your personal health data is between you and your doctor. It is, and it is not because many people have access to it in many ways.

But why doesn’t HIPAA protect your health information? Because you have approved its use for specific purposes. Remember all those insurance and physician office forms you signed? They include approval as a condition of your care or insurance, and for good reason. Health data analytics and population health management play an essential role in providing efficient and effective healthcare for us all. Without them, epidemics like COVID would have been far more deadly and treatments and cures for many diseases would not be available.

Your information is safe. Every person having access to PHI and PII must be certified and pass a federally administered exam each year to keep that certification. There are strict rules in place to keep your, and everyone’s data secure.

How would I know? I held such a certification for years and was responsible for both PHI and PII for over 275,000 patients. Our site was secure. Our systems were protected by the latest anti-viral and anti-hacking software. Data never left the building. Everyone who had access was fully trained, background checked and certified. It was a strict requirement to receive the data and we were audited regularly as is any organization with access to such information.

With the RSDSA CRPS project, we will not have access to any patient information unless the patient gives express approval to allow us to have it, and that will be to assist them after they have been diagnosed and need our assistance.

To learn more about big data in healthcare, the National Institutes of Health has published an excellent briefing.

Educational articles and updates are provided as a service of your RSDSA Advocacy Committee 

Interested in volunteering as a member of the Advocacy Committee? Its as simple as emailing us at [email protected] to learn more. Or you can support us with a monthly gift. Just click here.

RSDSA receives no governmental support. We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.

Everyone Deserves Access to the Best

Written by the Hon. Jenn Coffey for the RSDSA blog.

An activist’s dream. That’s how I would describe the trip back to Washington D.C. for the “People’s Action Organizing Revival: a call to revitalize the movement for social justice by strengthening skills of community organizing at every level, and in every organization.” 

I arrived to find about a thousand people attending this conference, all of whom I was about to speak in front of. I felt like a schoolgirl with my knees knocking with stage fright. These folks represented the leadership of organizations from across the country. I lost count of how many states were represented. I’ve worked with activists my entire life but had never done anything on the scale of what I was about to experience.

I held back tears as person after person thanked me for sharing my story. These people shared the videos from the town hall, and the ones of me telling the story. People asked me questions about CRPS (Complex Regional Pain Syndrome). It was overwhelming to feel so seen, yet that was only the start of events that I didn’t even realize belonged on my bucket list.

The event had a large opening, complete with a marching band, energizing the over one thousand attendees and staff. There was incredible energy in the room, and I realized while sitting on the stage, who these people are. They are the doers, the ones who protest, write letters, or even make appointments to meet with the elected, and have their voices heard.

When it came to my turn to speak, I felt a surge of energy from the force of the applause in the room. These people are energized and able to do the legwork that I can only dream of. These are the people who signed the petition and shared the videos. The doers are in fact OUR team. Each of these people uses grassroots activism and organized the people in their states to fight the battles that everyday people face. They listened intently to me speak of our plight. How we struggle for diagnosis and treatment. The devastation is caused by private for-profit medical insurance companies, denying more than they approve, especially for those with rare illnesses like CRPS or Small Fiber Neuropathy.

The roar of the crowd was overwhelming, and I took a moment to just breathe. In this journey, I have seen that it is really important to be present and take in moments like this.

The next day was all about learning and connecting. People broke into different sessions focusing on various tools. Some concentrate on techniques, like how to deep canvas and have discussions on hard conversations. Politics in the last few years has become more volatile, making it even more intimidating to speak to the elected about the forever sick. For my part, we focused on having conversations with people who don’t agree with you. I didn’t realize how much of that skill comes from the lives we live as warriors with CRPS.

We have all experienced it, dealing with people who have no idea we exist, or the blocks we face in accessing healthcare. I’ve found myself defending my treatments to the well-meaning pseudo-expert trying to tell me how to “cure” CRPS. The more we speak up and become real to the world, the more possibilities there are. That unfortunately means lobbying the elected in order to protect our community and fight for access to life-changing treatments, typically blocked by nothing more than a lack of money. My goal at this moment is to get Congress to hold hearings on how these companies, especially with Medicare Advantage plans, leave patients without treatments, without comfort measures, and without dignity. We need to change the system these companies operate in and use against people with CRPS to deny treatment. This convention was teaching the tools to do just that.

The final day was organized chaos in the very best of ways. First, we loaded 20 buses, with bus drivers who had no idea where they were going to drive to. All they knew was that over 900 of my closest friends were going to flash mob protests in specific locations around the DC area. When we acted on healthcare, we protested outside of the offices of the very lobbyists who diminish our medical care. They lobby for less responsibility for health insurance companies, giving their corporate stockholders billions in profit. We wanted to put them on notice. We are no longer going to stand by while people suffer and die without care readily available at most hospitals, but inaccessible because they can’t afford to buy in.

I’ve been able to share our stories of losing our homes and struggling to afford care and food. So many of us have become medically poor in large part due to so-called “medical” insurance companies, which would rather we die off than pay for us. We are so very “expensive” to keep alive. 

Being on the streets of Washington DC surrounded by people chanting and demanding medical care for all. For an end to massive denials while we suffer unable to navigate the appeals process. It’s a chance to turn the tables and force elected officials to see us. We have to push for hearings to address private health insurance greed. These people made sure we were seen.

The next part was a whirlwind of epic efforts. We lobbied in private meetings with the Senate finance committee staff for hearings on denials. We told them that we needed them to investigate. We told them about computers using keywords to issue denials. We moved on to Senator Markey (D-MA), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Subcommittee on Primary Health and Retirement Security. Sharing the same things with him, hoping he will investigate how these companies seem to default on Denial of Care. Far too often we have to battle these companies in order to stay alive. We met with a staff member whose job it is to work on these very issues for the entire HELP committee. 

If we can get them to hold hearings, we can be heard on a large stage. We can show people the reality of our lives, and our constant battles with insurance companies to access the medical care we need. 

Often I have received, in writing and on the phone, an apology from the insurance representatives. They say, “We are sorry for your inconvenience.” That’s how out of touch and ignorant they are of the medical treatments that they have the power to say yes or no to. More than once I have told them to stop saying that. This is not “an inconvenience,” I tell them. This is my LIFE!

If it wasn’t for the buses, Lyfts, and people willing to rent a wheelchair to push me around, I couldn’t have done any of this. It was a good exercise on finding my limits. I’ll admit, this one got to me, and when I got home it turned into a two-week recovery. It was so very worth it. Nothing will change if we cannot be seen by the decision-makers.

Next up, I will go back to DC to meet with some New York City retired first responders who are having to fight to keep their Medicare. Some are 9/11 first responders who have rare illnesses and sicknesses caused by that horrific day. I have little doubt that there are CRPS patients.

They should be home enjoying their well-earned retirements, yet here they are. We will be meeting up in a church where they will get some key points to help them lobby their senators and representatives. Their mission is to preserve and protect the traditional Medicare plans they have. The city mayor and others are attempting to force them off of those medical plans and onto, you guessed it, private for-profit medicare advantage plans. Many would lose their providers and hospitals, being forced to move to “in-network” providers. Trying to use the backs of the sick and most vulnerable to make cuts on medical costs. We with CRPS know this too well. I’ll be sharing my story and helping them to have more ammunition for their fights.

There will be a press conference where I will have a chance to again share our existence with the world. I will also lobby more senators and representatives. Do you know who is representing you? If you visit you can find out, and even send them an e-mail message. Every time you contact them, they see a voter and it puts our issues back in front of them. The more of us that ask for these hearings and share our stories of denials and roadblocks to care. There are grassroots organizations in many states that would love nothing more than to help you have your voice heard.

Everyone deserves access to the best American medicine can provide. Stay tuned for the report on this next effort in Washington D.C.