tag:blogger.com,1999:blog-6993740852730466692.post2919162826433145497..comments2024-03-18T03:31:10.487-07:00Comments on Regina Holliday's Medical Advocacy Blog: Pecking OrderRegina Hollidayhttp://www.blogger.com/profile/14067714192642008661noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-6993740852730466692.post-34717249191676166572012-05-24T20:49:43.760-07:002012-05-24T20:49:43.760-07:00There are things we can do that are not a waste of...There are things we can do that are not a waste of time, but our minds are mired in a paradigm that it is rude to disagree with, even though it is nonsense.<br /><br />A decade ago it was heresy to suggest that having doctors sign patient safety initiatives was never going to make a measurable difference in the rates at which patients are ruined by them one way or the other. It took a decade of wasting time on that for patients to figure that out.<br /><br />Now everyone wants to partner with them. It's the wrong paradigm. It is a misunderstanding of the problem yet again, to think that this will actually change the rates of unnecessary deaths and bankruptcies across the nation. But this apparently is another phase we have to wade through for a decade before people figure out that it is no better an idea than getting them to sign patient safety initiatives.<br /><br />Including them in the effort to solve the problems prevents the problems from ever being solved. The problems can be solved, but not with them. Only without them and in spite of them.<br /><br />Getting them to listen more and include us more is a great thing, but it is like chrome on a car bumper. First you need the bumper. We don't have that yet. There is no point in getting the chrome until we do.<br /><br />Anyone want to talk about getting the bumper?Joelhttp://www.patient-safety.comnoreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-22777716283633173792012-05-24T12:54:18.561-07:002012-05-24T12:54:18.561-07:00Thank you. Hashtag suggestions have been #pWp and...Thank you. Hashtag suggestions have been #pWp and #flockhealthcare. Would love your input!Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-39158093186868647862012-05-24T12:53:16.829-07:002012-05-24T12:53:16.829-07:00My patient figures are starting to carry banners a...My patient figures are starting to carry banners and flag now in the paintings. Waiting has passed, doing is now!Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-71450521809315240802012-05-24T12:52:02.474-07:002012-05-24T12:52:02.474-07:00See you then~ I know you are a fellow firecracker ...See you then~ I know you are a fellow firecracker on this issue and others....Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-74110580399954326052012-05-24T12:51:04.549-07:002012-05-24T12:51:04.549-07:00Thanks John! I say we step up and insert ourselve...Thanks John! I say we step up and insert ourselves. Lets get messaging into facilities that we design not what they make for us or for themselves. Patients are amazing diverse and have great ideas let's start harnessing our own power! We need true partnership with anyone who is willing hold us as we hold them. Nothing about us without us. We are all patents in the end!Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-35852196612449799302012-05-24T12:47:08.871-07:002012-05-24T12:47:08.871-07:00Dave, thanks for chirping in when your travel sche...Dave, thanks for chirping in when your travel schedule is so insane. They have agreed to go to healthcamp which makes me very hopeful for future collaboration. Onwards and Upwards!Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-25412419541232736372012-05-24T12:28:54.164-07:002012-05-24T12:28:54.164-07:00Bravo!!! Bravo Regina!!! I just met you through f...Bravo!!! Bravo Regina!!! I just met you through friends on Facebook. I am an RN that is beyond disillusioned with just the sort of cluster-f*** care and management you are talking about. I happen to have over 30k followers on twitter so I almost stood on my chair and applauded when you posted "Someone forgot tell these folks there is a new bird in town, it's blue and it tends to tweet a lot." Go for it, Regina. what's the hashtag?SpiritualNursehttps://www.blogger.com/profile/13542560554965576479noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-60029514652853946562012-05-24T10:29:18.625-07:002012-05-24T10:29:18.625-07:00Paternalism and bureaucracy kill people every sing...Paternalism and bureaucracy kill people every single day. Kudos to you for shouting in their faces and actually getting their attention!<br /><br />We do need a revolution. We need to stop asking permission, and start taking firm action - you've kicked that off, and now it's up to all of us to storm the healthcare Bastille and demand that this Kafka-esque vaudeville act gets the hook.<br /><br />I would *love* to attend HealthCampDC, but not sure if I can until some receivables arrive - will be there if humanly possible! And will mos def be at the Walking Gallery.MightyCaseyMediahttps://www.blogger.com/profile/15676994193165585448noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-21650682055694687572012-05-24T07:29:51.429-07:002012-05-24T07:29:51.429-07:00Regina, kudos for standing up for us all. It is e...Regina, kudos for standing up for us all. It is early in the morning CA time where I flew last night and had been basking in the warm glow from attending a Partners in Patient Health meeting back in DC where patients and patient groups were invited in at the start. Sigh! There is much work still to be done to create a policy and systems design culture where we are FIRST on the list rather than last. Also, on the point of subcontractors -- contracting is a powerful tool and we should not let CMS off the hook for choosing a firm unqualified to do his sensitize work. See you June 4.DCpatienthttp://www.dcpatient.usnoreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-69756112519218334092012-05-24T07:04:26.737-07:002012-05-24T07:04:26.737-07:00Having worked in healthcare in various capacities,...Having worked in healthcare in various capacities, I can attest to the pervasive paternalism that e-Patient Dave describes. For all the talk of "patient-centered care", the patient is usually an afterthought. <br /><br />There's so much infighting between doctors and hospitals, doctors and insurers, hospitals and regulators, etc., that the there's little time or energy left for patients.<br /><br />Add to this indifference the underlying reality of defensive medicine - admitted to by over 90% of doctors surveyed - that views patients first as potential legal adversaries. No wonder they call office visits "encounters".<br /><br />To quote Dr. Victor Montori of the Mayo Clinic, "We need a revolution". And it doesn't need to rely on the good will of our providers to allow us sit at the table - as Regina is demonstrating with her initiative.<br /><br />Perhaps they need reminding that without patients they all go broke.John Lynchhttp://ourhealthcaresucks.comnoreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-64801212097580359802012-05-24T06:37:24.822-07:002012-05-24T06:37:24.822-07:00I was traveling & speaking the past two days -...I was traveling & speaking the past two days - this is INCREDIBLE, Regina. You ARE a force of nature. <br /><br />So, was that "interactive" webinar archived for us all to hear?<br /><br />This whole thing strikes me as the very definition of paternalism: "WE will have a partnership FOR you. Don't worry, we'll take care of you. We'll let you know if we want anything from you."<br /><br />I'm heartened to hear that the organizers *say* they hear you. Let's do everything in our power to teach them what they haven't realized. It seems pretty clear that they just haven't "gotten it" yet; let's help them get it, and let's not take "Not yet" for an answer.<br /><br />Someday there will be a statue of you... or maybe not, because a statue can't show the thousands and millions of patients and families. So it'll probably be ... a mural.e-Patient Davehttps://www.blogger.com/profile/16381434866099596466noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-11473795935735580842012-05-24T04:53:01.108-07:002012-05-24T04:53:01.108-07:00I got the same vibe. They are planning to come to...I got the same vibe. They are planning to come to health camp June 4 in DC. Will you be able to come?Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-88140925218813101222012-05-24T04:16:34.991-07:002012-05-24T04:16:34.991-07:00Follow-up call yesterday from organizers indicates...Follow-up call yesterday from organizers indicates they "hear" us and want to do better. This would not have happened without your speaking up as you did! I won't be in Internet contact next 10 days - but at the rate you're going, I fully expect you to solve this whole thing by the time I get back :)Pat Mastorshttps://www.blogger.com/profile/12572742020333587763noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-29196981914614101092012-05-24T03:58:32.248-07:002012-05-24T03:58:32.248-07:00Sometimes we just have to speak out of turn to hav...Sometimes we just have to speak out of turn to have a turn to speak :)Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-4227685786517068312012-05-24T03:57:09.494-07:002012-05-24T03:57:09.494-07:00Thank you. It is all of us working together. We ...Thank you. It is all of us working together. We shall prevail.Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-90530704909829091132012-05-24T03:53:14.353-07:002012-05-24T03:53:14.353-07:00*Stands up and gives huge round of applause, compl...*Stands up and gives huge round of applause, complete with a bit of bouncing and crys of, "Whoop! Whoop!"* Thank you again for being the advocate you are...for all of us!Chris Deanhttps://www.blogger.com/profile/00008694485795818520noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-70883482265870709822012-05-23T21:41:02.557-07:002012-05-23T21:41:02.557-07:00This old bird is so tired she can hardly lift her ...This old bird is so tired she can hardly lift her wings. She is very thankful for the new blue bird in town who . Whose tweets, talents and energy have blessed the entire flock. Thanks Regina.Safer-Healthcarehttps://www.blogger.com/profile/08231186063676129014noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-62939588626544975042012-05-23T21:24:19.116-07:002012-05-23T21:24:19.116-07:00Woot! It sounds like that is a rocking digital he...Woot! It sounds like that is a rocking digital health statement. As far as the 4th can you come to Healthcamp that morning at the KP building? I think we will propose a session on this.Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-6807090579876817272012-05-23T21:01:24.447-07:002012-05-23T21:01:24.447-07:00I remember when you put out the info to apply - I ...I remember when you put out the info to apply - I had tried to fill out the application but couldn't pull it together in that timeframe. Now, much as I hate to say it, I'm almost glad because I would have lost my mind going through that call. Today at our event we went over the Digital Patient Bill of Rights, and I covered the two tenants about the patient voice: The patient is the largest stakeholder, and the patient experience is a valid clinical resource. They are two of my 'favorite' items in the list of six.<br /><br />I really can't commit to more than this due to other traveling I'll be doing and an important doctor appointment, but if you do have something come together I should be able to participate on June 4.Jenny Phttps://www.blogger.com/profile/14870488565611786295noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-4570815745494779752012-05-23T15:43:46.892-07:002012-05-23T15:43:46.892-07:00Ah beautiful Tiffany, you see beauty within my sou...Ah beautiful Tiffany, you see beauty within my soul as I see it within yours. Nothing will ever stop us from flying above the thousand small and not so small indignities within our lives. we have both been through the crucible but are still believe firmly that great change is possible. We can storm the barricades and let our elder statesmen lean upon our shoulders as we charge the gates. It it takes the energy of all to rise in revolution. I will do everything in my power to make sure you are part of the next meeting and all thereafter.Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-88123277321424952592012-05-23T15:30:51.401-07:002012-05-23T15:30:51.401-07:00I have had this post as well as 'Error 404'...I have had this post as well as 'Error 404' open on my long extensive tab-list on my browser. As each day goes by numerous more tabs are opened, articles read & bookmarked for later, many of them whittled to 140 characters and tweeted or posted amongst various patient communities on Facebook.<br /><br />As I read this post on the pecking order, I began to remember your tweets from last night when you told me, "How do you keep patients on the farm when they have learned to parry." I didn't understand the entirety of your tweet in relation to this post. I understood your tweet due to my own frustrations with an Australian physician's rheumatology post on lupus; his cold words slapping lupus patients across the globe with a dismissive tone...I spoke up, I would not remain silent, and have even had many a patient or physician step back in fear of what my speaking up "might do".<br /><br />I must confess when receiving the email after sending my application out in the wee hours of the morning, pressed for sleep, and right before a medical health-geared conference I felt much apprehension. When participating in these medical/health conferences I always feel like the "under-dog". I look around and I am a smidgen of color among a sea of white. I often wonder if it is even worth it to speak up. Will they listen when quite often my voice is ignored and over-looked. I am not just a patient; I am a patient of color, and in many of these conferences I am often reminded of that regardless of my intellect. Some do not see pass the color. <br /><br />I admit it does hurt that the email I was sent was entirely different than all the others sent. When I read it I had this gut feeling that I knew exactly why I was sent that response. So when I read your frequent posts on it I admit I was completely shocked! <br /><br />Thank you for sharing Regina. You are a beautiful person inside AND out. You encourage me to continuously speak up and out loudly not only as a voice for all patients, but also against the prejudice that people of color still endure today. Thank you.<br /><br />My feathers may indeed be quite charred from these experiences but I will not let that stop me from spreading my wings in flight for positive change.Anonymoushttps://www.blogger.com/profile/13451092411599491289noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-40323990618585635102012-05-23T14:46:36.994-07:002012-05-23T14:46:36.994-07:00Ugh, is correct. Working on team building overtur...Ugh, is correct. Working on team building overtures as we speak...Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-61019575714962227702012-05-23T14:44:49.919-07:002012-05-23T14:44:49.919-07:00I am getting the feeling based on follow up calls ...I am getting the feeling based on follow up calls that they are willing to learn. The beginning was mangled and too long delayed, but we can build a partnership of mutual respect if each of us get a chance to listen and talk.Regina Hollidayhttps://www.blogger.com/profile/14067714192642008661noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-79349975728351444322012-05-23T14:05:56.036-07:002012-05-23T14:05:56.036-07:00Ugh! - this is so disheartening and frustrating, b...Ugh! - this is so disheartening and frustrating, but indicative of the clubbiness and haughty attitude that permeates the medical community. I am continually amazed at how often I am talked down to - how often it's been assumed over the last 12 years of advocating for my brain-injured son that I am totally ignorant. Not once has a doctor, nurse or other medical professional taken the time to figure out I have a brain, I have learned a lot in 12 years and I happen to have a wonky Master's degree!! I don't know how we will get anywhere in patient reform unless the medical community opens up to the possibility that intelligence and insight exist in many places and in many forms outside the parameters of the formal medical community.Robin Miles-McLeanhttps://www.blogger.com/profile/01392006337566286933noreply@blogger.comtag:blogger.com,1999:blog-6993740852730466692.post-40329598916856702092012-05-23T12:10:00.580-07:002012-05-23T12:10:00.580-07:00Regina, your capacity to paint striking imagery wi...Regina, your capacity to paint striking imagery with words as well as you do with a brush is stunning. <br /><br />That this overture to involve patients in a meaningful way stumbled, reflects a mindset that this hugely important step could be "subbed out" to a group (well meaning and capable as any subcontractor can be) that can't know the players, nor grasp the urgency, for historic reasons, to build respect. <br /><br />When you truly want to move forward in building a relationship (applying for a job? Attracting a new client? Negotiating a deal?), an in-person meeting is best. Next best is a teleconference (where everyone can see each other). Third is an phone conference where content is driven by the person/group being solicited. Last has to be where that group is asked to carve out two hours to listen to and watch a presentation that (for the most part) might as well have been pre-recorded. <br /><br />No offense to the providers on the call whom I believe are sincere in their desire to move forward with our participation. But I found disingenuous the statement right off the top - that "we know you are all busy, and have trouble carving out time from your lives to attend meetings in-person", and that "the webinar format will allow more of you to participate". That's when I began to feel "managed". The truth is each of us that applied to participate was prepared to MAKE the time (yes, re-arranging our lives if necessary) because it is THAT important. <br /><br />So yes, we're feeling like our feathers are a little charred. <br /><br />I'm hoping that as smart people they will regroup and move forward more effectively.Pat Mastorshttps://www.blogger.com/profile/12572742020333587763noreply@blogger.com