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patient advocacy

Surprise medical bills = stress on blast

By cancer, e-patients, healthcare industry, healthcare price transparency

In case you missed it, getting a Really Big Diagnosis like, say, cancer, is a big whack to the wallet. Even if you have titanium-plated insurance (spoiler: there is no such animal in the US healthcare payment system), there will be bills for many, many things.

If you have a deductible, be prepared to build a spreadsheet matrix with complex algebra to calculate how much of what care will be on you. If you have co-insurance – your spouse’s employer coverage, for instance – that’ll add complexity to your algebra.

It’s a lot.

In a piece on the Discover credit card and financial services blog, recent Cancer Club inductee Kris Blackmon lays out how unexpected medical expenses impact people dealing with a Really Big Diagnosis, or any ongoing health issue that requires lots of clinical care – and therefore medical bills – offering a solid strategy for dealing with those bills.

Do your research

Talk to your clinical team’s billing office in advance about what your options are under your coverage plan. You’ll have to do this with each provider and facility you’ll receive care in – Blackmon says she chose to be treated at a major academic medical center because of the one-stop care coordination available in a comprehensive care setting.

Ask all the questions

If you’ve been hanging around these parts for any length of time, you know I’m all about being your own best advocate when getting medical treatment. Kris Blackmon puts mustard on that ball by recommending that, even if you wind up in the emergency department (which can totally happen during cancer treatment), you ask to speak to the billing department rep in the ED before any treatment is ordered, or delivered, so you know what your options are, and what the bill might be for them.

Read the fine print

Yeah, yeah, “nobody reads the Terms and Conditions,” but when you’re getting medical treatment … YOU GOTTA READ ‘EM, KIDS. Reading all of each bill, and lining it up with your health plan coverage, can unearth errors and fact-check the bills you need to pay to meet your deductible. By the way, did you ask if all the clinicians delivering your care were in-network in the previous section? If not … SURPRISE! And not the fun kind with confetti and cake, the not-fun kind with you being on the hook for their charges, thanks to something called balance billing.

infographic medical expenses affect just about everybody

Think it’s just you? Nope. It’s all of us.

Social Workers and Other Organizations May Help You Manage Expenses

When I was dealing with my own Cancer Year, I not only served as my own care coordinator, I was also my own social worker – I was handed a resource sheet by my surgeon’s NP, and then worked the phones and web on my own behalf to find ways to pay the bills that were piling up, as well as the living expenses ditto. Cancer treatment is expensive, and it’s also exhausting – if you have to keep working (which I did) to keep the wheels on your life from falling off. Most hospitals and large health systems have social worker staff to help folks navigate resource options – use them!

What to do? Here’s how others managed.

There’s more!

I’ve shared the highlights of Kris Blackmon’s post on the Discover blog – read the whole thing here. Need some help? Reach out to me here. It takes a village to manage medical care – getting it AND paying for it. Happy to help if you need it.

Digital Patient Bill of Rights: check!

By cancer, e-patients, healthcare industry, participatory medicine

A group of about 20 passionate e-patients, including e-Patient Dave his own self and yours truly, gathered around a biiiiig table on Monday in Philadelphia to talk about what an e-patient Bill of Rights might look like. I have to give a shout-out to my buddies at WEGO Health, particularly Jack Barrette, Bob Brooks, and Natalia Forsyth

e-patients imageOne conclusion: don’t call it the e-patient Bill of Rights. Since we’re talking digital healthcare, let’s call it the Digital Patients Bill of Rights. That conclusion was reached hours into the discussion, which ranged over topics from chronic conditions like diabetes, HIV/AIDSmultiple sclerosisrheumatoid arthritislupusmultiple sclerosis, and fibromyalgia to acute illness like cancer.

We had about four hours to hammer out a first-principles statement, and Mark Bard of the Digital Health Coalition deserves the Cat-Herding Nobel Prize for keeping a group of vocal, passionate, diverse e-patients on task.

To lift directly from the Klick Pharma blog (Klick was one of the sponsors of the event, along with Pixels & PillsHealth CentralCare CoachKru ResearchRadian 6Red NucleusThink BrownstoneVerilogue, and a who’s who of health media sponsors):

“After an intense four hours, we were able to reach consensus on the following key messages as a foundation to a Digital Patient Bill of Rights:

  • Shared access to my data
  • Attitude of collaboration and overall respect
  • The patient is the largest stakeholder
  • Transparency and authenticity across all areas
  • Voice of the patient is a legitimate (clinical) source
  • The right to efficient communication with providers who utilize the technology that we need”

It’s a start. A damn good one. The Klick Pharma blog post also has a full list of all the e-patients who participated in the conversation. It was quite a day.

Some of my thoughts about the conversation, and the event:
  • Those dealing with chronic conditions have an even deeper need to be activist e-patients. They also have a greater level of knowledge, and can be true leaders in this on-going discussion.
  • Each healthcare consumer – formerly known as “patient” – must take action and responsibility on his/her own behalf. And not shut up until they get what they need to achieve the best health possible.
  • Having town-hall meetings across the country, inviting community members – healthy, chronic, whatever – to attend, to share, and to learn how to both be consumers of healthcare and advocates for the family members who depend on them, would be a great way to keep the ball rolling and drive wide awareness/support for empowered, engaged e-health.
  • Those of us who’ve taken a trip through the medical care car wash have a duty to share our stories, to lead, to educate, to shake up the status quo, to effect change. We get the elected representatives, and the healthcare, we deserve.

Have any thoughts on what you’d like on your Digital Patient Bill of Rights? Tell me.

It’s your health, your healthcare, your life, your choice. Exercise it.