Entrepreneurship, Healthcare

Patient Advocates, aka Healthcare Rangers

02.20.07 | Comments

Dr. Ramona, orginally uploaded by WisDoc

As follow up to yesterday’s post on physician trust, I thought I’d briefly delve into patient advocacy services, a topic that’s received some press as an emerging healthcare service - one to watch, or get involved in if you’re so inclined.

The practice generally involves assisting consumers as they navigate the healthcare system.  Such aid can mean (a) administrative outsourcing - patient/payer intermediation for instance, and/or (b) service optimization - recommending doctors, ensuring quality treatment at a hospital, even acting as notetaker as treatment protocol is delivered.

Much like product pushing, patient advocacy is garnering pushback from healthcare “purists.”  A May 2006 Boston Globe article on the profession highlights the point:

The very idea that patients would need an outsider to lobby for them inside a hospital is anathema to many doctors and nurses, who feel passionately that they are already advocates for patients, doing their best to get patients the care they need.

Again, despite the naysayers, I’m a fan.  Traditionally, we’ve seen family play the role of service advocate.  Consider MedTrackAlert’s innovative “CareCircle” information services concept.  Increasingly, though, I’d expect the most discerning consumers to seek professional guidance in the form of part-time or retired nurses and doctors.  The latter, especially, have only entered of late but already have left evidence in the blogosphere of positive impact.  Here’s an excerpt from a cancer patient’s experience with a Dr. Gwendolyn Stritter, an advocate working out of San Francisco:

Dr Stritter
Wed eve I had the phone consult with Dr Stritter the patient advocate. Barry/Carl was on the call with me. She had many helpful suggestions.
1. I must have a CA125 test each month
2. Try a different doctor at Kaiser Walnut Creek (she gave me a name)
3. Get a phone consult with Harvard or Anderson (both are cancer specialist) regarding using estrogen therapy for treatments instead of chemo. They have recently done these treatments.
4. Go to a specialist for “Inner Active guided Imagery” ( I have a lot of fear)
5. She says its possible to try 10 different things with each working on the cancer/tumor 10%. Meaning 10% X 10 = 100%
6. My tumor from surgery is in a vault at Kaiser. Ask Dr Kaufman( or new doctor) to retrieve it and have it analyzed to see what type of chemo etc would be effective. Cost $800.
7. Melatonion is good for cancer patients. Start with low dose and work up to as much as 20 mg.

Sounds awfully comprehensive and useful to me.  Sure, having a “competing voice” in treatment will often raise the hairs of a physician, but for complex, life-threatening cases, or as insurance against the frighteningly high medication dispensation error rate in hospitals, I’m a believer.  Again, I’d expect transparency to win out eventually.  We’ll fill in the blank in 5 years: patients with an advocate experience __% better/worse outcomes than those without.  Then we’ll drill down by advocate, hospital, etc.  Ironically, the more informed consumers will likely opt for advocates and we’ll see a broadening outcome gap.  On the other hand, might advocate intervention mask poorly performing practitioners?

Anyone have experience with service-focused patient advocates?

For those interested, Trisha Torrey offers online broad-strokes advocacy information.

Viewing 12 Comments

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    Matt,

    Thanks! We're working on building a much more comprehensive library of content there. I've recently moved to that site from About.com, and I have hundreds of articles, tips, etc. that we're working on getting up.

    Great blog you have. I've added you to my blogroll on www.WeAreAdvocates.

    Teri
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    For Melanie,

    Yes, I know people with similar circumstances, and there are steps you can take to predetermine who will make those decisions for you. Whether there are advocates readily available depends on where you live. In many areas, hospitals have Social Services departments with personnel with staff who can help you locate an advocate. Your doctor may also know advocates in your area.

    Another option is available if you have a friend whose judgment you trust. You can have a legal medical power of attorney drawn up. It's a binding document that would allow that person to make medical decisions when you're not able, and with that document, your family would have to defer to their decisions.

    I think most people would prefer to have such decisions in the hands of a trusted friend rather than an advocate who might be a relative stranger to them. Whichever route you take, you'd have a legal document that determines who makes your medical decisions when you can't. You need to make sure that document becomes a part of your medical records, both with your doctors and any hospitals you go to. It's also wise to carry a copy of it in your wallet.

    Hope this helps,
    Teri
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    Thanks for dropping in with a note, Teri! I checked out MyMigraineConnection and you've got some great content. It's interesting to see the wealth of information that's becoming available on specific conditions. Glad to hear you're helping support consumers' decisions!

    Best,
    Matt
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    Teri,
    I have a question I hope you can help me with. I'm a single 58 year old woman in excellent health but want to have a plan in place in case I become incapable of making healthcare decisions for myself. For instance, in an emergency, if I should become unconscious and need immediate medical attention and prolonged attention if I am too ill to make decisions---I want to know I have an advocate that could be called to make the right decisions for me. My family is not capable of doing this so I must be prepared.

    Have you heard of any circumstances like this and if so, are there any steps I can take--to have a competent advocate in case I need one?

    Thanks so much.

    Melanie Wood
    mraeh89@yahoo.com
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    What a fascinating conversation!

    My experience as an advocate has demonstrated that many doctors feel that the encouragement of an advocate helps their patients become better educated about their health issues and thus better able to work with them as treatment partners in making vital decisions.

    I'm sure this is the case with many conditions, but I can speak most clearly about Migraine disease and headaches since that's where my experience lies. I encourage all patients to learn as much about their conditions as they can and prepare a list of any questions they may have for their doctors before the appointment, avoiding forgetting them or wasting precious appointment time. As someone else said, I tell patients to never, ever change their treatment or try even so-called "natural" treatments before discussing it with their physicians.

    To the consternation of some doctors, but the delight of others, I also try to instill in patients a sense of being responsible for their own health and "firing" doctors who will not take time to answer questions and show no respect for the educated patient. After all, studies have demonstrated that educated patients are more compliant with their treatment regimens and have better outcomes.

    I should probably say that I am not a paid advocate per se. I make my living as a writer, and often write content that teaches and encourages patients to advocate for themselves. When one of my readers or community members has a situation they cannot handle on their own, then I will involve myself as their advocate.

    Teri Robert
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    Matt--

    I am currently working on my own. I've found a number of different models for providing what I call "clinical patient advocacy" -- advocates who have professional healthcare experience. These models range from insurance companies that provide add-on health and wellness "advice" benefits 24/7 to eligible members, to stand-alone patient advocate "concierge" organizations that provide top-of-the-line (and expensive) healthcare advocacy services to members. Services for these models range from information about health, wellness, medical procedures, treatment options, to finding "best" doctors and facilities and "fast-tracking" appointments and making emergency arrangements for a member traveling anywhere around the world (including helicopter evacuation if necessary!).

    I've opted for a more personalized practice, as well as one that does not answer to a health insurance company and also one that is more affordable. While I still need to find clients that can afford to pay me, I'm hoping that I'll eventually be able to offer sliding scale and even pro-bono services, perhaps with research funding? While I believe everyone has the right to such a service, I am able to sleep at night for now because as more research shows that health outcomes improve and health costs decrease for those with the benefit of patient advocates, it is a role that will become more accepted and available to all. Of course the real dream is that people won't need patient advocates because the healthcare system will be so excellent. That's still a long way away. So in the meantime....this is my quest!
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    Betsy:

    Thanks for dropping by! I've heard your home ownership metaphor often with a tweak as car instead of home - see http://www.newstarget.com/008226.html for a great car/doc spoof article.

    Out of curiosity, are you working on your own or have you found good companies that are forming "stables" of advocates?

    Best,
    Matt
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    Speaking as an RN getting into the independent patient advocate services field, I always tell my clients to: 1) developing a working partnership with a healthcare provider that is high-quality and they trust with their care; 2) inform themselves about their condition; 3) always discuss information they have learned about independently, including alternatives, with their provider BEFORE making any changes to the plan of care that was mutually agreed upon by patient and doctor in the first place.

    In addition, I teach people how to be smart healthcare consumers by knowing their rights and fulfilling their responsibilities as patients, finding high-quality providers, getting second opinions when needed, developing working partnerships with providers, staying informed, and being vigilant. Here's another metaphor: As homeowners, let's say, making repairs or renovations to a home, we know our consumer rights (expect quality services) and fulfill our responsibilities (by paying our bills), find good quality contractors for services, get additional estimates and plans, develop partnerships with contractors and expect quality work and results, and are vigilant to be sure that the project is staying on track.

    Isn't our healthcare AT LEAST as valuable a commodity as getting a nice addition to our home, buying a new refrigerator, or television?

    Patient advocates are just as hopeful that the broken healthcare system gets reformed so that the dangers that patients face are minimized and avoided. We are using the skills and passion that we have to help people safely through the current system, while those with policy expertise and passion work on healthcare reform with our input.
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    Wow! It's great to see such lively and lengthy debate in the comments. Trisha, there's nothing like one's own experience to drive a passion. Congrats on having the wherewithal to advocate for yourself.

    Loren, as a general rule I'd argue it's foolish to curtail free market forces. You're right that medical "responsibility" plays a role here and shouldn't be dismissed. In fact, the majority of advocates as I understand the industry are registered nurses and therefore reasonably qualified advisors. But let's say for the sake of argument that they're just self-educated experts. The way I look at an advocate is one more tool in a belt allowing one to think for oneself/protect oneself. And I'd expect most who hire them hold this view. Advocates are healthcare consultants.
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    Loren,

    All your well-thought-out reasons AGAINST a patient advocate system are, in fact, the very reasons a patient advocate system is so necessary.

    Here's a metaphor -- see if you can picture yourself in this position: you are visiting another country where the language and customs are completely foreign to you. You are sick, and scared, and find yourself alone, in a hospital or other location where, supposedly, someone is going to help you. People are talking AT you, but you don't understand a word they are saying -- except, on occasion, they nod their heads, smile, pat your head, and you feel a bit safer, because they seem to know what they are doing. The next thing they do is hand you a pen, and a piece of paper and clearly they are expecting your signature. (This is what patients experience every day.)

    You ask if anyone speaks english. You ask for a translator. Nothing. So you cross your fingers, sign the paper, and hope for the best. Then they take you to an office where they are holding out their hands, and you realize they expect you to pay them. You find out that nothing will be done until you give them the money they charge -- in whatever their currency is -- and you don't have any way at all to explain about health insurance because you have no idea whether you are covered for whatever it is they've decided to do in whatever country you are visiting.

    What you don't know -- because you are now so horribly confused -- is that you have cancer, and if you don't have immediate surgery and follow up chemo, you will be dead in weeks.

    How could that situation be improved for you? A translator would help. The ability to ask questions of the providers would help. Access to resources for learning more about what is wrong with you could help. Clearer access to health insurance information would help. Someone to help you slog through the information you needed to make your own choices would help.

    Those are the things patient advocates do every day.

    By YOUR scenario -- you, the patient, would have had to wait for the world to decide it was time for everyone to speak english (so you could understand what the doctors were telling you), or wait for the politicians to straighten out the government mess, or for the legal eagles to figure out how to fix the laws, or the insurance providers to get their acts together. Or, you'd have to wait for everyone to have equal access to advocates because -- God forbid -- no one should find help because everyone can't find help.

    By that time, your cancer would kill you. You would be looooong gone. Shoot -- at that point, your CHILDREN will be long gone!

    I totally agree that the American health care system is a completely dysfunctional system that needs to be fixed. No question. But while all that dysfunction is being sorted out, discussed, debated, and while pharma companies continue to profit, alongside their malpractice and health insurance brethren -- people are dying, many of them needlessly.

    Even then -- even IF/WHEN all that gets cleaned up and straightened out, you're assuming that doctors will buy-in to the notion of patient involvement/ input/feedback. So far? Most don't. You should SEE the email I get, and the stories I hear.

    One last point to make. Had I waited for the fantasy-land you described, I would be dead. Because it was patient advocacy -- one single patient advocating for herself -- that kept me from undergoing chemo for a cancer I was diagnosed with -- and didn't really have.

    Gee, I'm glad I didn't wait for the dysfunction to sort itself out. And the hundreds of patients I have helped since then seem pretty grateful I'm here to advocate for them today.

    Trisha
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    Matt and Trisha,

    The concept of patient advocacy is a new one to me, however my immediate reaction is that it is just additional cost being heaped upon an already grossly overpriced health-care system.

    The use of a 3rd party adviser to the patient only treats the symptoms of a broken system and does nothing to address or contribute to the repair of the underlying problems (such as inability of doctors to spend enough time with patients or the inaccuracy of filling prescriptions). If we are serious about improving health care, then doctors need to be directly accountable for the services they provide and we need to find alternatives to heaping on additional services to fix the system.

    A 3rd party adviser also opens the door to serious legal issues. When a 3rd party adviser empowers the patient to drive their own treatment decisions, the doctor looses control of managing his patent's health. In the case that Matt quoted, the 3rd party is a retired doctor...is this doctor still licensed? If so, are they taking on shared responsibility with the PCP/Specialist? If they are not licensed, what kinds of controls and standards are applied to such service providers? Can a patient over-turn a doctor's treatment decisions based on the 3rd party advise and if so should this even be allowed?

    Furthermore, while patient involvement/input/feedback are integral to effective medicine and health, patients can never be as educated as their doctors--the body of knowledge in the field is constantly expanding and doctors are consequently specializing further into areas of medicine that require decades to master.

    On a different note, this type of service does not appear scalable (i.e. it could not be made available to the masses). While some would argue that that is irrelevant (that the wealthy should be able to purchase premium health care), I think that implementing a system like this before the real issues have been solved risks further splitting a diverging health-care system where the rich are over-charged for health care and the poor can't afford basic services.

    -Loren
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    Hey Matt -- thanks for the shoutout. In fact, Entrepreneur Magazine did a piece on patient advocacy being a "hot" trend in new businesses for 2006... 2007 probably right until 2030 when maybe we'll all be our own doctors?

    Also -- very interesting question whether using an advocate will mask problem doctors. Hadn't thought about that.

    For anyone who's interested, I'm putting together a directory of advocates for patients who seek them. Just the bare bones is online for now -- hoping to launch in April. check it out: www.advoconnection.com

    Keep up the good work. You make me think. That's a good thing :-)

    Trisha Torrey
    EveryPatientsAdvocate.com
    DiagKNOWsis.org
    Advoconnection.com
    EPAblog.wordpress.com

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