› Forums › General Melanoma Community › Barriers to Optimal Care
- This topic has 12 replies, 4 voices, and was last updated 11 years, 2 months ago by
brooke.
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- September 24, 2013 at 2:18 pm
Dear MPIP Community,
The reason for this post is two-fold. The first is to tell you about three upcoming educational symposia that the MRF will be co-sponsoring in the next few months. The first will be in Denver on October 26, 2013. The dates for the other locations (Pheonix and Miami) will be announced soon. We are participating in a pilot program where we will combine patient education with physician education. Both sessions will be led by expert medical oncologists. The patient session will highlight melanoma diagnosis, prevention and treatment information. At the same time a different oncologist will provide a presentation to healthcare providers, allowing them to earn continued medical education hours (CME). During the afternoon session, the patients and the healthcare providers will come come together and the content will focus on helping the two groups identify and overcome communication and other barriers to optimal care.
This leads me to the second reason for this post – a request for you to share with me some of the barriers to care that you've experienced. What are some communication barriers have you experienced with your healthcare team? What about other barriers to optimal care that you've experienced? For example, one communication barrier that we've heard a lot is, "My doctor said 'clinical trial' and all I heard was 'guinea pig'." Do you have others?
This novel approach to combining patient and physician education is very exciting and we'd love to have your input. Thanks in advance for anything you have to offer!
Sincerely,
Shelby – MRF
- Replies
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- September 24, 2013 at 3:07 pm
Interestingly, I think that one of the greatest barriers to optimal care is the recent rapid pace of advances in melanoma treatment.
There is no way a general oncologist can keep up with the melanoma literature, the clinical trials, the side effects of Zelboraf or Yervoy, etc. Not on top of knowing all they have to know about breast cancer and colon cancer and lung cancer and so on. As things stand now, melanoma patients have to identify and get themselves to a melanoma center of excellence (and get their insurance company to approve same) in order to get optimal care from a team of melanoma specialists. This is a medical, emotional and financial hardship on a lot of patients who do not live near a melanoma center of excellence.
In order to improve patient care, I think there should be some system where patient data and expert advice could be remotely shared between melanoma specialsts and general oncologists. If the MRF could foster such communication between doctors– by removing the stigma of one doctor calling another for help, or the specialist feeling overwhelmed or exploited for information, or overcoming technical barriers to sharing data and advice– that would go a long way towards providing optimal care for melanoma patients.
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- September 24, 2013 at 4:17 pm
While POW’s idea is not a bad one, I’m not sure it is the best use for the limited resources of this Foundation. As a pediatric nurse practitioner married to a pediatrician and being in the medical field working with other NP’s physicians and sub specialists…oncologists can, should and in fact are required to keep up with advances in their field in order to keep their license. Obviously, some take this more seriously than others. I am afraid providers who fail to avail themselves of the latest publications, symposiums, ASCO, and all sorts of additional opportunities for continuing education will not take advantage of such a service should MRF work to put it together. Additionally, the docs and NP’s that I respect and have spent my career working with in Chattanooga have never failed to pick up the phone to call experts in Atlanta, Nashville, New York, California…wherever the best information resides for the patient in their care.As a melanoma patient, who began this journey long before ipi was on the market, I was assisted by my local oncologist in finding resources further afield…. then and for the most part even now….melanoma treatments like TIL, IL2, anti-PD1, ADC’s remain either in trial or as services located only at a limited set of hospitals across the country. Even SRS is not consistently available at local facilities for most Americans, and even when it is, the quality varies greatly from one facility to another.
The best advice for medical care of any kind has always been….go to the place and the person who does it the most. If you need heart surgery, you don’t want that done by the doc and institution who provides that service once a year! You want to see the folks who do it several times a day.
So…this does put the patient back at square one. You will be forced to be your own best advocate….just as you are when getting your car fixed or your home repaired. That is very hard when you are sick and frightened and that is where boards like this one are so helpful. This will also put the onus on the patient, who hopefully will DEMAND the assistance of their local onc, to find the nearest melanoma specialist. Again, boards like this one are invaluable in helping these patients get in touch with groups who can help them with financial issues and logistics. And…unfortunately with a disease like melanoma…persistence, hopefully, over many years, will be required. The support from other peeps on boards like this one helps with that as well.
It is unfortunate that there is so much difficulty in gaining access to medical care in our country. I recently wrote a blog post about this very thing. We can do better. If we looked at everyone as deserving of care as we feel ourselves to be, or our child, or our own parents….I bet we can make a lot more happen….for everyone. Celeste
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- September 24, 2013 at 5:26 pm
Biggest problem is that there is so much going on in the melanoma world that not even a Melanoma specialist can both see patients, do research and reead everything that comes out ans still get enough sleep to stay alive. I woulld not expect a general Oncologist to be able to keep up on all fast moving treatments.
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- September 24, 2013 at 5:26 pm
Biggest problem is that there is so much going on in the melanoma world that not even a Melanoma specialist can both see patients, do research and reead everything that comes out ans still get enough sleep to stay alive. I woulld not expect a general Oncologist to be able to keep up on all fast moving treatments.
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- September 24, 2013 at 5:26 pm
Biggest problem is that there is so much going on in the melanoma world that not even a Melanoma specialist can both see patients, do research and reead everything that comes out ans still get enough sleep to stay alive. I woulld not expect a general Oncologist to be able to keep up on all fast moving treatments.
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- September 24, 2013 at 4:17 pm
While POW’s idea is not a bad one, I’m not sure it is the best use for the limited resources of this Foundation. As a pediatric nurse practitioner married to a pediatrician and being in the medical field working with other NP’s physicians and sub specialists…oncologists can, should and in fact are required to keep up with advances in their field in order to keep their license. Obviously, some take this more seriously than others. I am afraid providers who fail to avail themselves of the latest publications, symposiums, ASCO, and all sorts of additional opportunities for continuing education will not take advantage of such a service should MRF work to put it together. Additionally, the docs and NP’s that I respect and have spent my career working with in Chattanooga have never failed to pick up the phone to call experts in Atlanta, Nashville, New York, California…wherever the best information resides for the patient in their care.As a melanoma patient, who began this journey long before ipi was on the market, I was assisted by my local oncologist in finding resources further afield…. then and for the most part even now….melanoma treatments like TIL, IL2, anti-PD1, ADC’s remain either in trial or as services located only at a limited set of hospitals across the country. Even SRS is not consistently available at local facilities for most Americans, and even when it is, the quality varies greatly from one facility to another.
The best advice for medical care of any kind has always been….go to the place and the person who does it the most. If you need heart surgery, you don’t want that done by the doc and institution who provides that service once a year! You want to see the folks who do it several times a day.
So…this does put the patient back at square one. You will be forced to be your own best advocate….just as you are when getting your car fixed or your home repaired. That is very hard when you are sick and frightened and that is where boards like this one are so helpful. This will also put the onus on the patient, who hopefully will DEMAND the assistance of their local onc, to find the nearest melanoma specialist. Again, boards like this one are invaluable in helping these patients get in touch with groups who can help them with financial issues and logistics. And…unfortunately with a disease like melanoma…persistence, hopefully, over many years, will be required. The support from other peeps on boards like this one helps with that as well.
It is unfortunate that there is so much difficulty in gaining access to medical care in our country. I recently wrote a blog post about this very thing. We can do better. If we looked at everyone as deserving of care as we feel ourselves to be, or our child, or our own parents….I bet we can make a lot more happen….for everyone. Celeste
-
- September 24, 2013 at 4:17 pm
While POW’s idea is not a bad one, I’m not sure it is the best use for the limited resources of this Foundation. As a pediatric nurse practitioner married to a pediatrician and being in the medical field working with other NP’s physicians and sub specialists…oncologists can, should and in fact are required to keep up with advances in their field in order to keep their license. Obviously, some take this more seriously than others. I am afraid providers who fail to avail themselves of the latest publications, symposiums, ASCO, and all sorts of additional opportunities for continuing education will not take advantage of such a service should MRF work to put it together. Additionally, the docs and NP’s that I respect and have spent my career working with in Chattanooga have never failed to pick up the phone to call experts in Atlanta, Nashville, New York, California…wherever the best information resides for the patient in their care.As a melanoma patient, who began this journey long before ipi was on the market, I was assisted by my local oncologist in finding resources further afield…. then and for the most part even now….melanoma treatments like TIL, IL2, anti-PD1, ADC’s remain either in trial or as services located only at a limited set of hospitals across the country. Even SRS is not consistently available at local facilities for most Americans, and even when it is, the quality varies greatly from one facility to another.
The best advice for medical care of any kind has always been….go to the place and the person who does it the most. If you need heart surgery, you don’t want that done by the doc and institution who provides that service once a year! You want to see the folks who do it several times a day.
So…this does put the patient back at square one. You will be forced to be your own best advocate….just as you are when getting your car fixed or your home repaired. That is very hard when you are sick and frightened and that is where boards like this one are so helpful. This will also put the onus on the patient, who hopefully will DEMAND the assistance of their local onc, to find the nearest melanoma specialist. Again, boards like this one are invaluable in helping these patients get in touch with groups who can help them with financial issues and logistics. And…unfortunately with a disease like melanoma…persistence, hopefully, over many years, will be required. The support from other peeps on boards like this one helps with that as well.
It is unfortunate that there is so much difficulty in gaining access to medical care in our country. I recently wrote a blog post about this very thing. We can do better. If we looked at everyone as deserving of care as we feel ourselves to be, or our child, or our own parents….I bet we can make a lot more happen….for everyone. Celeste
-
- September 24, 2013 at 3:07 pm
Interestingly, I think that one of the greatest barriers to optimal care is the recent rapid pace of advances in melanoma treatment.
There is no way a general oncologist can keep up with the melanoma literature, the clinical trials, the side effects of Zelboraf or Yervoy, etc. Not on top of knowing all they have to know about breast cancer and colon cancer and lung cancer and so on. As things stand now, melanoma patients have to identify and get themselves to a melanoma center of excellence (and get their insurance company to approve same) in order to get optimal care from a team of melanoma specialists. This is a medical, emotional and financial hardship on a lot of patients who do not live near a melanoma center of excellence.
In order to improve patient care, I think there should be some system where patient data and expert advice could be remotely shared between melanoma specialsts and general oncologists. If the MRF could foster such communication between doctors– by removing the stigma of one doctor calling another for help, or the specialist feeling overwhelmed or exploited for information, or overcoming technical barriers to sharing data and advice– that would go a long way towards providing optimal care for melanoma patients.
-
- September 24, 2013 at 3:07 pm
Interestingly, I think that one of the greatest barriers to optimal care is the recent rapid pace of advances in melanoma treatment.
There is no way a general oncologist can keep up with the melanoma literature, the clinical trials, the side effects of Zelboraf or Yervoy, etc. Not on top of knowing all they have to know about breast cancer and colon cancer and lung cancer and so on. As things stand now, melanoma patients have to identify and get themselves to a melanoma center of excellence (and get their insurance company to approve same) in order to get optimal care from a team of melanoma specialists. This is a medical, emotional and financial hardship on a lot of patients who do not live near a melanoma center of excellence.
In order to improve patient care, I think there should be some system where patient data and expert advice could be remotely shared between melanoma specialsts and general oncologists. If the MRF could foster such communication between doctors– by removing the stigma of one doctor calling another for help, or the specialist feeling overwhelmed or exploited for information, or overcoming technical barriers to sharing data and advice– that would go a long way towards providing optimal care for melanoma patients.
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