Does anyone have info. on health advocates
October 9, 2005 3:21 PM Subscribe
I have seen friends and relatives become ill and not know exactly where to go or what to do. Obviously a doctor is a good choice. But when a person has a fatal disease that requires research to make a right decision and dealing with insurance companies, etc., etc. Are there health advocates that one can contact that can be trusted? Are they paid for through health insurance and are they impartial in that they will help you make your own choices?
What duck said isn't entirely true. Many insurance companies now have what they call Care Management as part of what they do. The doctors, nurses, and others who you talk to when you call are hired by the insurance company and are their employees. Any other doctors, hospitals or medical companies that need to be brought in to assist do have contracts with the insurance company. But that does not mean they are the cheapest, or that they provide poor quality.
I work for a health insurance company, and there are many factors that go into contracting with a doctor or facility for my company. Yes my company wants a profit, but in order to do that they need to compete with more than just price. For example, they need to have enough doctors and hospitals contracted within a certain area to be useful to their members and gain business. Sometimes they lose out on price to gain access. Also I don't think their members would stay very long if the company only contracted with poor doctors. The field is very competitive right now, and employers and other insurance consumers are paying close attention to these things.
What I am trying to say is that Care Management through your insurance company should certainly be an option you look into. Don't shy away just because the insurance industry can be evil. I have seen many success stories.
posted by veronitron at 4:29 PM on October 9, 2005
I work for a health insurance company, and there are many factors that go into contracting with a doctor or facility for my company. Yes my company wants a profit, but in order to do that they need to compete with more than just price. For example, they need to have enough doctors and hospitals contracted within a certain area to be useful to their members and gain business. Sometimes they lose out on price to gain access. Also I don't think their members would stay very long if the company only contracted with poor doctors. The field is very competitive right now, and employers and other insurance consumers are paying close attention to these things.
What I am trying to say is that Care Management through your insurance company should certainly be an option you look into. Don't shy away just because the insurance industry can be evil. I have seen many success stories.
posted by veronitron at 4:29 PM on October 9, 2005
There are several sources of information besides one's regular doctor (or the health-maintenance program of the coverage provider), of varying utility and credibility (no particular order):
1. Referrals to specialists, or second/third opinions when specialists are already involved.
2. Lay media resources: books, magazines, websites. Health articles in publications or sites like WebMD, for example. Large-ish websites with information about many disorders can be terrific starting points, but lay-media articles tend to be "managed" in terms of their message, so clinical accuracy may lose out to a "good story."
3. Patient-advocacy groups. There's basicaly three kinds of advocacy groups:
- Groups within the healthcare-delivery system (parent groups that meet during a specialty clinic for kids with a specific disorder, for example). These might be led by a hospital or clinic staff person.
- Lay-founded advocacy groups. These are usually started by parents or individuals with a disorder and can offer everything from support services to clinical registries. They might even plan and fund research into their condition.
- Industry-founded education groups. If a "grassroots" groups seems extra excited about a particular drug, that may give a clue to the origins of the group!
--
For serious conditions, it's a good idea to use as many sources of information as possible. Keep your eye open for clues to credibility, and don't be afraid to ask questions. If you're getting resistance when you ask, consider approaching your care differently, even if it means changing healthcare providers.
posted by caitlinb at 4:50 PM on October 9, 2005
1. Referrals to specialists, or second/third opinions when specialists are already involved.
2. Lay media resources: books, magazines, websites. Health articles in publications or sites like WebMD, for example. Large-ish websites with information about many disorders can be terrific starting points, but lay-media articles tend to be "managed" in terms of their message, so clinical accuracy may lose out to a "good story."
3. Patient-advocacy groups. There's basicaly three kinds of advocacy groups:
- Groups within the healthcare-delivery system (parent groups that meet during a specialty clinic for kids with a specific disorder, for example). These might be led by a hospital or clinic staff person.
- Lay-founded advocacy groups. These are usually started by parents or individuals with a disorder and can offer everything from support services to clinical registries. They might even plan and fund research into their condition.
- Industry-founded education groups. If a "grassroots" groups seems extra excited about a particular drug, that may give a clue to the origins of the group!
--
For serious conditions, it's a good idea to use as many sources of information as possible. Keep your eye open for clues to credibility, and don't be afraid to ask questions. If you're getting resistance when you ask, consider approaching your care differently, even if it means changing healthcare providers.
posted by caitlinb at 4:50 PM on October 9, 2005
Just to be clear, I didn't mean to imply "poor doctors" or anyone who was in anyway non-competent.
I thought the poster was asking asking about people who essentially read the relevent literature on a given illness etc., keep up on all the different treatments, get all the details if your situation (charts, test results, talk to you about your live, and what kind of person you are and what you like to do, and your family situation etc. etc.) and try to help you to make sense of the research in the context of your situation so you can choose your best treatment option. I suppose this image came into my head because I once saw an ad in Harper's magazine where a "wealthy" family wanted to hire such a person to basically read and evaluate all the relevant literature whenever a member of the family had a health related question or decision.
So based on the idea that we're talking about that and not doctors or nurses or anyone who you would talk to when you call the insurance company...(if I'm misunderstanding the original question, this is moot).
People have different baseline levels of risk aversion and risk-taking, and general aggressiveness in any decision that they make. There is no way that the advocate's baseline levels on these things would no influence the decision ultimately made by the patient since these little biases will always creep through in the way that the advocate presents information to the patient.
I have a very hard time believing that the advocate whose patients are more likely to choose orthopedic surgery over orthotics, or whose patients are more likely to choose over or more likely to choose home care over repeated trips to the hospital or whatever, wouldn't be either leaned on by the insurer to bring down rates of orhopedic surgery/expensive drug/home care or find that their contract was less likely to be renewed than the person whose patients were more likely to choose orthotics/cheap drug/hospital visits.
That doesn't mean that there won't be surgery/pricey drug/home care leaning advocates out there, but the bias will lean toward cheap. The strength of the bias might vary, but it will be there. If you want unbiased I wouldn't allow the insurance company any role at all in choosing the person you worked with (including having "preferred" providers, or providers on contract, or direct employees of the company).
You can't seriously expect that given that the insurance company will have a preference about what you choose, that the preference will have no influence at all on the way in which their employees present or explain options to you.
posted by duck at 4:58 PM on October 9, 2005
I thought the poster was asking asking about people who essentially read the relevent literature on a given illness etc., keep up on all the different treatments, get all the details if your situation (charts, test results, talk to you about your live, and what kind of person you are and what you like to do, and your family situation etc. etc.) and try to help you to make sense of the research in the context of your situation so you can choose your best treatment option. I suppose this image came into my head because I once saw an ad in Harper's magazine where a "wealthy" family wanted to hire such a person to basically read and evaluate all the relevant literature whenever a member of the family had a health related question or decision.
So based on the idea that we're talking about that and not doctors or nurses or anyone who you would talk to when you call the insurance company...(if I'm misunderstanding the original question, this is moot).
People have different baseline levels of risk aversion and risk-taking, and general aggressiveness in any decision that they make. There is no way that the advocate's baseline levels on these things would no influence the decision ultimately made by the patient since these little biases will always creep through in the way that the advocate presents information to the patient.
I have a very hard time believing that the advocate whose patients are more likely to choose orthopedic surgery over orthotics, or whose patients are more likely to choose
That doesn't mean that there won't be surgery/pricey drug/home care leaning advocates out there, but the bias will lean toward cheap. The strength of the bias might vary, but it will be there. If you want unbiased I wouldn't allow the insurance company any role at all in choosing the person you worked with (including having "preferred" providers, or providers on contract, or direct employees of the company).
You can't seriously expect that given that the insurance company will have a preference about what you choose, that the preference will have no influence at all on the way in which their employees present or explain options to you.
posted by duck at 4:58 PM on October 9, 2005
support groups that include people with a similar diagnosis are a great resource. i also find the internet to be very useful, at least from a learning perspective.
posted by brandz at 5:55 PM on October 9, 2005
posted by brandz at 5:55 PM on October 9, 2005
If I were to find myself in this kind of situation, I would go the support-group route.
However, for lower-level concerns than the ones mentioned in the question -- the "is this sort of thing serious?" type questions that AskMe gets all the time -- there are Ask-A-Nurse type services that are very useful. Some are free, some come with my insurance, and some are run by employers. But it's sometimes useful to bounce a question off of someone who won't be directly involved with my care, who has medical expertise, and whose only job is to answer my question.
posted by Vidiot at 7:45 PM on October 9, 2005
However, for lower-level concerns than the ones mentioned in the question -- the "is this sort of thing serious?" type questions that AskMe gets all the time -- there are Ask-A-Nurse type services that are very useful. Some are free, some come with my insurance, and some are run by employers. But it's sometimes useful to bounce a question off of someone who won't be directly involved with my care, who has medical expertise, and whose only job is to answer my question.
posted by Vidiot at 7:45 PM on October 9, 2005
Response by poster: I hope it's not too late to comment on this, but do you think there is a need for unbiased advocacy that would be care centric and knowledgeable, thinking of only the patient in a compassionate and wise way. I have been thinking about this and see a need. It is a slippery slope and requires much work both for the knowledge and the pitfalls that abound. The organization would have to be all thing to the patient almost like a relative that had the time to be there for them, I am so surprised that this doesn't exist or at least in a way I imagine it to be. I understand there are organizations that will help but with so much to choose from just finding the organization and being involved while your sick could use some help.
Thanks for all the feedback
posted by aisleofview at 3:09 AM on October 10, 2005
Thanks for all the feedback
posted by aisleofview at 3:09 AM on October 10, 2005
aisleofview, this need is already being served by thousands (yes, thousand) of patient-advocacy groups just in the US alone. Many of those groups have international chapters, or at least interact with like-minded groups elsewhere.
Most of these organizations are disease-specific, and they work hard to create contacts with physicians and other points in the healthcare delivery system to ensure that people find out about them when they receive a diagnosis. The nature of serious illness, the kind that can benefit most from this kind of support, more or less assumes getting a diagnosis at some point, so there is practically no chance that a person is wandering in the wilderness, trying to decide which group to contact. Since most of them are volunteer organizations, they can be pretty hit and miss in terms of creating that awareness, but they are working at it already.
There is a need here, but I respectfully suggest that the need is not for the creation of a new organization that tries to support healthcare in a general way - and most definitely not for a single organization that is "all things to the patient almost like a relative." Rather the need is for better integration of advocacy and support into the fabric of healthcare delivery - both improved compassionate care within the system (if what we have can be thought of as something as coherent as a system) and better awareness of groups that are striving to become allied groups.
posted by caitlinb at 8:39 AM on October 10, 2005
Most of these organizations are disease-specific, and they work hard to create contacts with physicians and other points in the healthcare delivery system to ensure that people find out about them when they receive a diagnosis. The nature of serious illness, the kind that can benefit most from this kind of support, more or less assumes getting a diagnosis at some point, so there is practically no chance that a person is wandering in the wilderness, trying to decide which group to contact. Since most of them are volunteer organizations, they can be pretty hit and miss in terms of creating that awareness, but they are working at it already.
There is a need here, but I respectfully suggest that the need is not for the creation of a new organization that tries to support healthcare in a general way - and most definitely not for a single organization that is "all things to the patient almost like a relative." Rather the need is for better integration of advocacy and support into the fabric of healthcare delivery - both improved compassionate care within the system (if what we have can be thought of as something as coherent as a system) and better awareness of groups that are striving to become allied groups.
posted by caitlinb at 8:39 AM on October 10, 2005
Couple of thoughts in response to your questions, as follows:
First, a second opinion from a doctor you select, and perhaps pay for outside your own insurance channels if necessary, can be invaluable. In many U.S. based health plans, there may be a higher co-pay, or reduced benefits for selecting non-network physicians, but if the issue is getting reliable medical advice, and guidance about a medical condition, its treatment, and outcomes of possible treatment, that is the job of a second opinion practitioner. They have the training and clinical experience, plus the access to treatment information and outcome statistics, and the training to interpret these resources, that you need in an advisor. Moreover, they have the legal standing to obtain and safeguard your medical information, as well as the legal and moral obligations to act and advise in your best interests. Look for consultative credentials, including board certification, if you are trying to select a doctor independently. If you live in an area where there is a teaching hospital, it may be wise to contact the physician coordinator's office there for a referral.
Second, if your decision has ethical or legal issues attached, you may need to speak with a medical ethicist, a social worker, or other ancillary medical services professional. Again, it may be wise to begin looking for these resources at a hospital, since they are often on staff at these institutions. The costs for such consultations may not be as great as you might think, and if your questions can be answered directly in a short interview, may essentially be free. If it is clear you need help requiring significant time, you may find that you can qualify for sliding scale fees based your ability to pay, if your insurance doesn't cover it.
But don't try to make important decisions without competent advice, in an effort to save money. This is particularly important if the issue is medically complex, if the well being of others is also involved, or if you believe the consequences of a bad decision may be life altering.
posted by paulsc at 9:12 AM on October 10, 2005
First, a second opinion from a doctor you select, and perhaps pay for outside your own insurance channels if necessary, can be invaluable. In many U.S. based health plans, there may be a higher co-pay, or reduced benefits for selecting non-network physicians, but if the issue is getting reliable medical advice, and guidance about a medical condition, its treatment, and outcomes of possible treatment, that is the job of a second opinion practitioner. They have the training and clinical experience, plus the access to treatment information and outcome statistics, and the training to interpret these resources, that you need in an advisor. Moreover, they have the legal standing to obtain and safeguard your medical information, as well as the legal and moral obligations to act and advise in your best interests. Look for consultative credentials, including board certification, if you are trying to select a doctor independently. If you live in an area where there is a teaching hospital, it may be wise to contact the physician coordinator's office there for a referral.
Second, if your decision has ethical or legal issues attached, you may need to speak with a medical ethicist, a social worker, or other ancillary medical services professional. Again, it may be wise to begin looking for these resources at a hospital, since they are often on staff at these institutions. The costs for such consultations may not be as great as you might think, and if your questions can be answered directly in a short interview, may essentially be free. If it is clear you need help requiring significant time, you may find that you can qualify for sliding scale fees based your ability to pay, if your insurance doesn't cover it.
But don't try to make important decisions without competent advice, in an effort to save money. This is particularly important if the issue is medically complex, if the well being of others is also involved, or if you believe the consequences of a bad decision may be life altering.
posted by paulsc at 9:12 AM on October 10, 2005
This thread is closed to new comments.
posted by duck at 3:32 PM on October 9, 2005