Issues we've discussed include:
- How to define a sensible rallying point -- something the public can understand and support, and something that is powerful enough to withstand the push-back from the mighty self-interests gaining from the status quo who will resist such change.
- What must be done for patients/consumers to feel confident and secure in the belief that they do/will receive the best possible care when sick -- tailored to their particular needs, characteristics, and preferences -- which is delivered in a safe, timely, and efficient (cost-effective) manner.
- How to help the public learn about and understand the serious problems with our broken healthcare system and collaborate to come up with possible solutions.
- How to empower patients/consumers to have an informed and meaningful say in their own health and healthcare.
The will is the issue and breaking down the glass ceilings that exist. Patients want to be involved but often times either there is no place or they are suffocated the the organizations which purport to speak for them. There is a pleuthora of comments from patients/citizens such as:
“The absurdity of a 'patient-led' NHS What next: a lunatic-led asylum?”
“ I can think of numerous innovations in healthcare over the past 50 years ....... that were introduced on the initiative of medical and nursing staff. The dramatic improvements in standards of primary care over recent decades owe little to patients and less to politicians........
Though it is difficult to think of any useful innovation that has resulted from either political or consumer intervention, numerous useless and wasteful initiatives......”
Author Dr Michael Fitzpatrick
December 2005 the British Journal of General Practice.
21 November 2005 http://www.spiked-online.com/Articles/0000000CAE7D.htm
“This educational program is intended for
physicians in active clinical practice, clinical
researchers, nurses and healthcare administrators
who are interested and/ or involved in the
management of cancer.
No specialized knowledge or skills other than
a general familiarity with cancer and its treatment
is required for successful participation in this program.”
“The groups believed that they are not listened to even when they are invited and involved in discussions. What they found to be worse than this is someone else trying to represent them and their point of view...... They also do not want an Ombudsman.”
Kathy Kovacs Burns, Project Researcher et al; The Volunary Hea;tj Sector As Participants In The Public Health System: Defining The Role And Impact 2006 Submission from Best Medicines Coalition/The Arthritis Society of Canada July 2006 http://www.patientsandconsumers.org
When I speak, I speak of 'urgency of cause' which is a phrase wasted on many. Of note is published research recently which starts out by saying....110 years ago, 50 years ago - and the progress has been?
Two years ago, I envisioned a program led-by patients in co-operation with the 'experts'. No one is interested - no one. These patients are intelligent, articulate and simply have an urgent need to express the and their issues in a public way.
The bureaucracy and the empire-building is astounding and so, we wait. If we could actually think outside-of-the-box, to use a well-worn phrase then we would be much further ahead. Patients and caregivers alike actually communicating in honest and open ways - how simple and yet how out of reach.
Thank you for your insightful comments.
You’ve identified the reluctance of healthcare professionals to empower patients (consumers) to have a strong voice and be a driving force for healthcare reform. And you’ve expressed being frustrated in your efforts to engage patients and caregivers in open and honest dialogue by a bureaucracy lacking innovative ideas, perpetuating the status quo, and determined maintain its power and control.
Assuming what you've experienced is pervasive in the healthcare system, what kind of out-of-the-box thinking might help overcome these obstacles?
Well, one thing we could do is take the criticisms voiced by the professionals and that feedback as signposts of things to avoid and misconceptions to clarify. For example:
• “The absurdity of a 'patient-led' NHS What next: a lunatic-led asylum.” Apparently, some see a public (grass-roots) movement to transform healthcare as meaning clinical decisions will be made by patients instead of providers. This misconception will have to be corrected by helping the professionals understanding that clinical decisions will be a patient-provider team-like approach. Instead of being “patient-led,” in the proposed system, providers would focus on educating patients about the different treatment options, including quality of life issues (i.e., how each treatment is likely to affect their day-to-day life), risks, prognoses (likely outcomes), cost, and self-care demands during recovery/rehabilitation and maintenance of chronic conditions. Together, they would decide on a plan of care. In addition, with transparency, patients would also have the information needed to select providers best suited to meet their needs. This is NOT a patient-led system; it’s a patient-centered system.
• “…numerous innovations in healthcare over the past 50 years… were introduced on the initiative of medical and nursing staff. The dramatic improvements in standards of primary care over recent decades owe little to patients and less to politician.” This misconception seems to imply that a patient-centered system would inhibit improvements in care safety, quality and efficiency because it would somehow prevent healthcare professionals from improving care delivery. I see things very differently: Greater patient involvement would promote radical improvements by, for example, demanding ever-greater excellence, rewarding those who deliver the best care, supporting comprehensive research efforts, and giving providers vital feedback about the thoughts and feelings patients have that result in better outcomes. Because there is such a divergent of view here, it would be important for us to know more precisely the concerns of professionals having such ideas.
• “Though it is difficult to think of any useful innovation that has resulted from either political or consumer intervention, numerous useless and wasteful initiative.” I’m not sure why this person thinks a consumer-centered system will increase waste. For one thing, there’s never been such a system, so can one know it will be wasteful. We do know the current healthcare system is has plenty of waste (e.g., at least 30 percent of all direct health care outlays are the result of poor quality care, consisting primarily of overuse, misuse, and waste, with $2 billion being spent annually in excess medical costs alone. It may be that the person is equating political with consumer intervention (as indicating in his statement). While a strong case can be made for politically-driven healthcare waste, it’s erroneous to equate that with the likely affect of non-political grass-roots movements.
The quote that the views of patient/consumer groups are ignored or usurped is troubling. They must be empowered, enabled, and supported to have a meaningful say and influence. This can be done, but it’s not easy.
“we would be much further ahead [if] patients and caregivers alike actually communicating in honest and open ways - how simple and yet how out of reach.” I agree! Unfortunately, wisdom such as this has not been a priority in today’s society. Power, control, fear, ignorance, self-deception, and ego, and other such things make if difficult to bring about profound change. The antidote includes courage, persistence, knowledge & understanding, community, and group influence.
 Midwest Business Group on Health, with Juran Institute and Severyn Group. (April 2003). Reducing the Costs of Poor-Quality Health Care through Responsible Purchasing Leadership. Available at http://www.mbgh.org/templates/UserFiles/Documents/CostofPoorQualityReport.pdf
 NCQA (2004). NCQA Report Finds Major Gains In Health Care Quality, But Only For 1/4th of The System. Available at http://www.ncqa.org/Communications/News/sohc2004.htm
I am not a doctor or health care professional. I am an IT engineer working in Davao, Philippines. I recently had to go to the doctor here, and I fully expected something like we have in the states or worse. What I got was an education!!! When we arrived at the clinic it was very nice, clean, and the staff there was polite and helpful. The process was almost painless. I simply selected a doctor from a list, went to her office, filled out a health history form, and in 10 minutes was being examined by the doctor. I was not asked for insurance, or even if I had money.
The doctor like the staff was also polite, thorough, and not in a hurry. They took good care of me and seemed interested in my health. When it was all over the doctor gave me a discount card (50% off) all prescriptions. I was only charged 250 pesos’. This is an amount 90% here can afford. If a so called 3rd world country can achieve this why can’t the USA with its entire wealth do something similar?
Yes, Will...It does make one wonder! It might reflect a difference in cultural mind-set with many in the USA focused on "fierce independence" and all that matters is having more for "me & mine" versus "we're all in this together" and "care for your neighbor in need."
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