What part of “Give us our damn data” do you not understand?

Yesterday I attended “How Access to Information Can Empower Patients and their Caregivers,” conducted by the Consumer Partnership for eHealth. CPeH is an alliance of stakeholder groups sponsored by the National Partnership for Women and Families. It has no web site of its own – it’s just a Partnership for Consumer eHealth (duh), convening to work on accomplishing good health through IT – especially health data.

An incredible moment (and I don’t say that often) happened after three physicians presented how their organizations are giving patients access to their medical records online. Their presentations were all encouraging. But during Q&A we got down to the nitty details, and comments from two physicians revealed a well-meaning attitude that I can only describe as protective and paternal:

  • Concern about emotional impact of bad news
  • Concern about the difficulty of interpreting some reports: “Even I can’t understand radiology reports sometimes.”

Regina Holliday was there – the “73 Cents” artist whose husband died of kidney cancer in June. Ted Eytan MD, an avid advocate of patient empowerment, asked her thoughts. With a cold clear look in her eye she said:

When I finally got my hands on his medical records – a month after I asked for them – I saw that on 3/25, 3/26, 3/27 and 3/28 they mentioned an 8cm tumor in one kidney and 10cm in the other, a large growth in the abdomen, bone mets in the pelvis, sacrum, femur, and skull, and soft tissue mets throughout the lung; at the end the reports say they couldn’t get a good image “due to patient’s extremely distended bladder.”  The nurse’s notes of 4-7 also mention concern over urine retention.
After another CT on 4-10, then the radiologist comes to me to tell me verbally that the patient’s bladder is on the point of rupture.
My husband almost died from a ruptured and infected bladder, while in the care of hospital staff, because nobody read the record.  I could have read it and known he needed a catheter.

What came next was telling: a physician, meaning well I’m sure, said “Well, we can sit here – we’re all college educated …” and Regina said “I’m not.”

What lessons can we take away?  I’ll start:

  • You don’t have to be an MD to contribute value from seeing the record.
    • Consider the Minnesota kidney cancer tragedy two years ago. (A cancer patient awoke to find that the wrong kidney had been removed. It traced back to an error in the first dictated report.) If the family had seen the doctor’s notes they could have spotted the wrong-side error.
  • As internet visionary Clay Shirky has said, “Giving patients access to their medical records will just naturally improve the quality of what’s in there. It’s like the way you clean up when you know company’s coming.”

Regina summed it up in an email today: “Have they met the folks on ACOR? Might open their eyes.”

Perhaps protective paternalism should be inverted: DO show us our data, to help us save our own butts from medical error.

Now that I think of it, who wouldn’t want to let us help save our own family members?

What a fitting fulfillment of the meeting’s title – “How Access to Information Can Empower Patients and their Caregivers.” Thanks to CPeH and the National Partnership for an important meeting.

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Posted in: hc's problem list | medical records | policy issues | pt/doc co-care

 

 

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55 Responses to “What part of “Give us our damn data” do you not understand?”

  1. [...] What Part of Give Us Our Damn Data Do You Not Understand by Dave deBronkart at e-patients.net [...]

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