tag:blogger.com,1999:blog-32053362.post3989641442796920056..comments2024-03-26T00:25:34.026-04:00Comments on Not Running a Hospital: We saved one person's life. Can we keep it going?Paul Levyhttp://www.blogger.com/profile/17065446378970179507noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-32053362.post-21196813884831602762007-02-16T19:47:00.000-05:002007-02-16T19:47:00.000-05:00It is hard to add anything more meaningful to Dave...It is hard to add anything more meaningful to Dave's comments, but let me try a little in the next posting.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-65926097971631613282007-02-16T19:15:00.000-05:002007-02-16T19:15:00.000-05:00Andrew Dreyfus said: "We’re doing this because we ...Andrew Dreyfus said: "We’re doing this because we realize that patients need data so they can take more responsibility, become more educated and active health care consumers, and work better with their physicians and other caregivers."<BR/><BR/>No spit, Sherlock! This has recently become a matter of VERY great importance to me. I've been going by the monicker "Patient Dave" here, but it was all outpatient. Now I'm about to become inpatient.<BR/><BR/>Last month, completely out of the blue, I discovered that I have Stage IV renal cell carcinoma (kidney cancer), with metastases to the lungs; this week I learned that a recent knee pain is a "met" to the thigh bone. <BR/><BR/>The median survival time for this cancer, diagnosed at this stage with my factors, is 5.5 months.<BR/><BR/>So now this issue of "where do I get the best care - NO KIDDING, *NOW*" is of very great immediate impact to me, my wife, our children, my mother, my close friends, my employer. If I could get my hands on ANYONE who knew that info and wanted to withhold it from me, I'd... well, I'd express myself (one way or another) very strongly and loudly until they got the point.<BR/><BR/>NOBODY has more right to that information than the patient in need. NOBODY.<BR/><BR/>And it's a serious issue, because in my (very rapid) self-education, I've learned that there are a lot of well-meaning MDs out there who, because kidney cancer care is undergoing rapid change, aren't in on the latest methods. I joined a great online email support community, and every week or two someone new shows up whose hometown physician had given up and sent them to hospice(!) when in fact there are numerous treatment options applicable to them.<BR/><BR/>Just as Andrew suggests, I'm doing everything in my power to educate myself responsibly and partner with my providers. It's just silly to not allow me to know where I can get the best outcomes, or at least assure myself that I'm happy with my informed choice of provider compared to other options.<BR/><BR/>This is REALLY personal, believe me. If we can easily get info on the best used cars (hardly a matter of life and death), we certainly ought to have free access to information on who has high and low outcomes and accident rates.<BR/><BR/>I'll wrap it up by asking this: If you don't want me to have that information, WHOSE SIDE ARE YOU ON?<BR/><BR/>Patient Dave<BR/><BR/>p.s. In the absence of published data, I asked my email support community who's the best, and I'll just say that I'm very happy to be at BIDMC.<BR/><BR/>p.p.s. Through my group, I've learned that "5.5 month median survival" gives a very misleading impression. With today's treatments, lots of people beat that by many years. It's also commonplace for treatment to just halt the cancer, so it becomes a chronic condition, not a death sentence. But most of the treatments are harsh, and must be done in a specialist facility, which leads to the same conclusion: we need data on who's good at it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-85621214540184856302007-02-16T18:13:00.001-05:002007-02-16T18:13:00.001-05:00Thanks very much, Andrew.Thanks very much, Andrew.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-40281412664747994122007-02-16T18:13:00.000-05:002007-02-16T18:13:00.000-05:00Stayed tuned, Bwana. That is a forthcoming topic,...Stayed tuned, Bwana. That is a forthcoming topic, for sure.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-2533063754283023242007-02-16T14:24:00.000-05:002007-02-16T14:24:00.000-05:00Paul, We agree with you that “transparency works,”...Paul,<BR/> <BR/>We agree with you that “transparency works,” and we encourage other hospitals to embrace public disclosure. Right now, Blue Cross Blue Shield of Massachusetts provides hospital quality comparison data to members in the Member Self Service section of our website (www.bluecrossma.com), and we’re working on ways to release even more information. All of us in health care need to work together to develop new ways to promote the delivery of safe and effective care.<BR/> <BR/>We’re doing this because we realize that patients need data so they can take more responsibility, become more educated and active health care consumers, and work better with their physicians and other caregivers. We are also doing it because BCBSMA has an organizational commitment to always put our members’ health first. And we know that their health is only as good as the health care delivery system. <BR/> <BR/>Your efforts to improve the quality of health care at BIDMC and to publish all the data - good and bad - raises the bar for us all. Thanks for asking us to comment.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-18010442217227861152007-02-16T14:16:00.000-05:002007-02-16T14:16:00.000-05:00Paul, on the subject of transparency and disclosur...Paul, on the subject of transparency and disclosure, you are undoubtedly aware of the article by Studdert, Mello, Gawande, Brennan and Wang, titled Disclosure of Medical Injury to Patients: An Improbable Risk Management Strategy which may be found at:<BR/>http://content.healthaffairs.org/cgi/content/abstract/26/1/215<BR/><BR/>Perhaps you can comment on this subject when the time is right.<BR/><BR/>When will the time be right? When the occasion arises! (smile)Bwanahttps://www.blogger.com/profile/15081268445903161115noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-51970640996820571942007-02-16T12:53:00.000-05:002007-02-16T12:53:00.000-05:00Good points, anon. Good questions. These are com...Good points, anon. Good questions. These are complicated and busy institutions. Time will tell if results are sustainable without hurting other, equally important, care issues.<BR/><BR/>Casey, see some additional postings below on how this gets done -- especially "Change must come from within". Sometimes we do well, sometimes not.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-66487287249299217152007-02-16T12:27:00.000-05:002007-02-16T12:27:00.000-05:00Since I did Stats at university I feel somewhat co...Since I did Stats at university I feel somewhat confident to say that stats can be misleading.<BR/><BR/>Perhaps your stats exactly convey the improvements in one area, but are any other problems being ignored while you focus on this one? Of course while we can't answer that, people undoubtably perform better when the spotlight is shone upon them. Is it sustainable? Is it real in the big, big picture of an extremely complex system that makes a healthcare organization?<BR/><BR/>I have no idea, all I know is that stats can be misleading.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-61387313258509254572007-02-16T08:50:00.000-05:002007-02-16T08:50:00.000-05:00There is little I can say to back up your statemen...There is little I can say to back up your statements, other than thank you for being so forth coming and calling out to others to hold their hospitals accountable. Disease/Risk management is such a huge issue with hospitals these days and finding viable options to help keep infection rates low is even more difficult. How did you find something that worked for you? Was it simply your overall attention to details or were their other people involved. Your numbers are amazing and show that accidental death is possible to avoid.Annonymoushttps://www.blogger.com/profile/11719246388552253224noreply@blogger.com