Cindy Throop’s personal story of Participatory Medicine

Cindy on Bus 4Like our contributor Sarah Greene, DC resident Cindy Throop was moved by Paulo Freire’s book, Pedagogy of the Oppressed. “The patient revolution must come from patients,” Cindy says. “We can educate and inform patients, but ultimately only patients can speak for themselves.” Here is her personal story of participatory medicine in action in her own life, years before she heard the term.

Several years ago, after dealing with glasses and contact lenses for more than 20 years, I decided to have vision correction surgery. I went to the University of Michigan Kellogg Eye Center, where I was confident I would get the best care possible. After committing two thousand dollars to my health savings account (HSA) to pay for a good part of the surgery, I made an appointment and went in for an incredibly comprehensive eye exam.    

For the exam, they even used the ‘extra strong’ pupil dilating liquid on my eyes. I was actually pretty mad the next day, when my pupils were still dilated! But more seriously, the coolest thing about the eye exam was that I got to see full-color topographic maps of my eyes. The doctor showed me the map and explained the mild irregularities he was concerned about in each eye. As it turns out, I have a very mild form of keratoconus in both eyes.

If the keratoconus had been more severe, I would not have been a candidate for corrective surgery. He proceeded to tell me that in his own clinical judgment, he would not recommend the surgery. On the other hand, if I decided I wanted the surgery, he would be willing to perform it. The doctor wanted to make sure I understood that I was in a slightly higher risk category than people with no sign of the condition.

I asked him about the complications and if they were to happen, what could be done to address them after-the-fact. He was very direct and told me that complications could lead to even worse eyesight and that the complications would simply be irreversible. (Even with the assistance of glasses or contacts, I would never see clearly again.) I went home, feeling disappointed. I did some research on the internet. I sent him an email asking a follow-up question. He responded with additional information.

Ultimately, I decided not to have the surgery. I did my best to spend the $2K I had put in my HSA, which was pretty challenging given the restrictions on how it can be spent. I ended up with four new pairs of eyeglasses (which explains why I have them in multiple colors).

But more important than the financial loss is that I was given all of the facts and encouraged to make my own decision. After all, I would have been the one to live the rest of my life with the negative consequences, should there have been any.

In the years since, I have seen the price of the surgery go down. I’ve seen financing plans make it even more ‘affordable.’ I’ve seen special medical centers built for the sole purpose of performing this kind of surgery. I am often haunted by the following questions: What would have happened if I had gone to a facility that was driven more by profit than academic expertise? Would they have told me about the keratoconus? If so, would they have explained the increased risk at all, or would they have downplayed it?

This is why participatory medicine is so important. It has the potential to directly affect your health, yet it’s strangely elusive. Unfortunately, it’s not something you can always count on receiving. You experience it if and when you are fortunate enough to interact with clinicians who believe in it. It is relatively easy to know when you are being informed and included in the decision-making process. How do you know when you’re not?
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Related material:

Cindy cited a post here in May, “Participatory Medicine as Revolution! Think Critically! Communicate!”, contributed by Sarah Greene, Managing Editor of the Journal of Participatory Medicine.

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Comments

7 Responses to “Cindy Throop’s personal story of Participatory Medicine”

  1. Bill Reenstra says:

    Is this Participatory Medicine or a good doctor.

    You were seeing elective surgery, who had risk factors you were unaware of, these were explained to you, the doctor expressed his opinion and allowed you to make an informed choice. Bottom line you had a good outcome and were involved in the process. For any elective procedure this is how it should be.

    You are worried about doctors at specialty clinics and whether they are driven move by revenue generation or patient care. If a doctor felt that the benefits of the procedure out weighed the risks and failed to advise you of the risks, you would not have known enough to question his judgment.

    Your concerns are justified, but the key differences as I see it, are the ethical values of the doctors and not the patient’s participation.

  2. ePatientDave says:

    @CindyThroop guest post on e-patients.net – her *personal* story of Participatory Medicine #WhyPM http://is.gd/4A7YC

  3. Cindy Throop says:

    Excellent point, Bill. I completely agree. In a way, this story is more about ethics, but there is a gray area here worth exploring. To borrow a quote from the recent Building a Research Agenda for Participatory Medicine article:

    The view of traditional health care is that clinicians are responsible for the bulk, if not all, decision making in the health care relationship…What are the implications for training health professionals to interact with a growing population of active, informed, networked patients?

    I empathize with doctors in that they must constantly filter, in their personal and professional judgment, what information to share with patients. There is a continuum here from situations where a doctor omits critical information (unethical) to situations where a doctor makes a judgment call in choosing how (or whether) to share what he or she happens to consider relatively unimportant information.

    In a perfect world, we would not need this thing called ‘participatory medicine’. The reality is that we need it to counteract the effects of residual patriarchal medicine (where an old school doctor might argue that it would be unethical to ‘worry my pretty little head’ over unlikely outcomes) as well as things like medication errors. Harm is not always intentional. As patients, we have a real need to protect ourselves while we work with doctors to create a medical system that is more sensitive to the needs and preferences (not to mention, long term health outcomes) of patients.

  4. Cindy — A close friend recently had elective laser eye surgery. She, too decided in advance that she wanted it, went to a doctor, and for whatever reason, didn’t understand the risk of side effects. The surgery did not give her the desired results. She wound up with months of discomfort, poorer vision than before the surgery, and having to have followup surgery.

    I don’t know if the doctor did a good job warning her about potential side effects or not. You see Bill, Participatory Medicine is more than a good doctor with ethical values, it’s also a patient who is willing to listen, research, and make wise health decisions. The whole team has to participate.

    Two years later my friend is relatively pleased with the outcome of her surgery, but for six month to a year after, she was afraid she’d made a bad decision with an irreversible outcome. At that point, she was wishing she’d had all the facts and acted on them. She would have loved having four pairs of stlyin’ glasses.

    C~

  5. Cindy Throop says:

    Just one of my stories about #whyPM –> @JourPM e-patients.net, story of Participatory Medicine http://is.gd/4A7YC

  6. Jocelyn says:

    Cindy — thank you so much for sharing your story. When you stop to think what a blessing it is to have your eyes, your story is made that much more poignant. So much in life pales in comparison to what that loss would have been like, or even the loss of some of your vision and how you would have had to learn to compensate. Thank goodness you feel you were able to make an informed decision, we all should have this right.

    Best,
    Jocelyn

  7. Cindy, I’d even pause a moment on “In a perfect world, we wouldn’t need participatory medicine.” Would that be a world where we simply don’t need medicine? Or are we hoping maybe healthcare itself wouldn’t be necessary? Because I can’t find a way to imagine a world where I wouldn’t want to be engaged in any area where I care about the outcome, whether it’s medical or family or buying a car.

    It just seems natural to me.

    Some people think e-patients are people who use the internet for healthcare purposes. 10-15 years ago that was pretty accurate, because being an internet researcher was pretty unusual then. But today I tell people e-patients are the empowered and engaged ones – and that naturally includes being online about it, because as Pew data shows, people are pretty much online about everything these days.

    So calling someone an e-patient for using the Web is sorta like calling them a shoe-patient for using shoes to get to the doctor. It’s just what people do. :–)

    Anyway (hi Bill) I know people who assume they’ll be told everything they need to know, but as Cindy points out, that’s a constant balancing act for the professional. (I know Bill, and he’s very good at explaining very complex science in very simple terms. He should be a doctor, or a patient translator, or some such!)

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