The Learning Health System-To Σύστημα Υγείας που μαθαίνει


Eλληνική μετάφραση θα ακολουθήσει αργότερα

“Knowing is not enough; we must apply.

Willing is not enough; we must do.”

—Goethe

The HealthNewsReview.org weekly digest, published by Gary Schwitzer, a journalism professor and specialist in healthcare journalism, who was a member of the Faculty of the : Health and Healthcare Seminar Series II. The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care, held at the Salburg Global Seminar same time last year, was as usual in my inbox today.

Ιn the weekly digest, Gary Scwitzer comments that HealthNewReview.org was quoted several times in the new book of the IOM-Institute of Medicine.

I’m very pleased that HealthNewsReview.org – and our associated blog – were mentioned in an Institute of Medicine book, “Patients Charting the  Course: Citizen Engagement in the Learning Health System.“ 

My attention was not driven by the fact that HealthNewsReview.org was quoted, this is something to expect for an organization of its caliber, but it was rather the title of the book and more particularly “the Learning Health System”.

Many thoughts came through while I was downloading the book. I had a quick look into the Introduction and the Charter and Vision Statement and decided that this will be the book I will read during Christmas time.

Why? But first the humbleness that’s expressed by the “Learning Health System” is in contrast with what is the image the health professionals project and the derived perception of patients: physicians-know-it-all, physicians who spend the greatest part of their time in making more money rather than learning and taking care of patients.  Secondly, because EBM is currently used in my country, Greece, but also in other economic crisis hit European counties, as a means to justify healthcare budget cuts and not as a means to improve the healthcare services offered to patients.

Much discussion has been made on both sides of the Atlantic on the use of EBM. Should it be the only determinant of healthcare options? Who should write the EBM guidelines? How often should they be reviewed? What is the relation between EBM and cost of healthcare?

Last Monday, in Brussels, at the Engage2011, conference on The Future of Healthcare in Europe: Closing the Stakeholder Gap, where I was honored to speak about Greek Healthcare in the EFSF Era, among the questions raised by the audience, was also whether it is not better and less costly to base healthcare decisions on EBM.

In my opinion, EBM can serve only as a guideline about options, not determine the options, particularly in oncology.  In oncology, no cancer is exactly the same as another and science and medical technology develop much faster than EBM develop, therefore, it would be too risky to base therapeutic decisions solely on EBM, physician’s expertise, knowledge, personal preferences of the patient should be also included. Particularly today, when in oncology more than in other diseases, personalized medicines becomes a reality. Does EBM will also govern personalized medicine, which de facto seems to be more expensive as newer therapeutic molecules and agents are used, and not mass produced medicines?

In Greece, the Ministry of Health intends to use both EBM & DRGs as a means to curtail the healthcare expenditure. This is part of the measures already agreed with the Troica (IMF, ECT & EU) and of the ones that are foreseen in the 2012 State Budget and those to come with the new Loan Agreement to Greece.

Last week, at the Engage2011, Steve MacMahon, the President of the Irish Patients Association, talked about similar measures in Ireland. It is not without interest to mention that there is currently a lot of discussion in Europe and elsewhere about the cost of healthcare, as I already mentioned, a few days ago. On Dec. 15-17, there is the congress of the National School of Public Health in Athens on the future of healthcare under the economic crisis, on March 20 a similar congress “Shaping the Future of Healthcare in Greece”, is organized in Athens by the Financial Times with invited international speakers. It will also figure in the program of the annual congress of the Greek Clinical Oncology Society  in April 2012.  I hear of similar events in other European countries in the months to come.

It is not without interest to mention that the cost of oncological care is also a key topic at The San Antonio Breast Cancer Symposium, which I am honored to attend for the second time thanks to a generous scholarship of the ABCF-Alamo Breast Cancer Foundation.  On Wednesday, Dec. 7,at the Clinical Science Forum, the session Medical Economics-The Cost of Care, moderated by Dr. Eric P. Winer, of Dana Farber Cancer Institute will take place.

The presentations will cover topics “The cost of cancer care: How much do we spend sand how can we spend it better?” by Dr. Elena Elkin,PhD of Memorial Sloan-Kettering Cancer Center, “Healthcare Reform and cost control: Practical and ethical considerations for cancer care providers”  by Dr. Michael Hassett, MPH, of Dana Farber Cancer Institute and will be followed by a panel discussion with the presenters. This is definitely a session I will attend.

Coming back to the IOM book, I read only the Charter and Vision Statement, which I quote below, for quick reference. The book is a summary of a workshop by IOM’s Roundtable on Value & Science-Driven Health Care.  Its description:

“As past, current, or future patients, the public should be the health care system’s unwavering focus and serve as change agents in its care. Taking this into account, the quality of health care should be judged not only by whether clinical decisions are informed by the best available scientific evidence, but also by whether care is tailored to a patient’s individual needs and perspectives. However, too often it is provider preference and convenience, rather than those of the patient, that drive what care is delivered. As part of its Learning Health System series of workshops, the Roundtable on Value & Science-Driven Health Care hosted a workshop to assess the prospects for improving health and lowering costs by advancing patient involvement in the elements of a learning health system.”

(Note: the underling in bold is mine)

Judging from the Charter and the Mission Statement and the comments of Gary Schwitzer, I feel that it will be a much discussed book in the months to come.

Institute of Medicine

Roundtable on Value & Science-Driven Health Care

Charter and Vision Statement

The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care has been convened to help transform the way evidence on clinical effectiveness is generated and used to improve health and health care. Participants have set a goal that, by the year 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to-date clinical information, and will reflect the best available evidence. Roundtable members will work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possible solutions, and the priorities for action, and will marshal the resources of the sectors represented on the Roundtable to work for sustained public–private cooperation for change.

******************************************

The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care has been convened to help transform the way evidence on clinical effectiveness is generated and used to improve health and health care. We seek the development of a learning health system that is designed to generate and apply the best evidence for the collaborative healthcare choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care.

Vision: Our vision is for a healthcare system that draws on the best evidence to provide the care most appropriate to each patient, emphasizes prevention and health promotion, delivers the most value, adds to learning throughout the delivery of care, and leads to improvements in the nation’s health.

Goal: By the year 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to-date clinical information, and will reflect the best available evidence. We feel that this presents a tangible focus for progress toward our vision, that Americans ought to expect at least this level of performance, that it should be feasible with existing resources and emerging tools, and that measures can be developed to track and stimulate progress.

Context: As unprecedented developments in the diagnosis, treatment, and long-term management of disease bring Americans closer than ever to the promise of personalized health care, we are faced with similarly unprecedented challenges to identify and deliver the care most appropriate for individual needs and conditions. Care that is important is often not delivered. Care that is delivered is often not important. In part, this is due to our failure to apply the evidence we have about the medical care that is most effective—a failure

related to shortfalls in provider knowledge and accountability, inadequate care coordination and support, lack of insurance, poorly aligned payment incentives, and misplaced patient expectations. Increasingly, it is also a result of our limited capacity for timely generation of evidence on the relative effectiveness, efficiency, and safety of available and emerging interventions. Improving the value of the return on our healthcare investment is a vital imperative that will require much greater capacity to evaluate high-priority clinical interventions, stronger links between clinical research and practice, and reorientation of the

incentives to apply new insights. We must quicken our efforts to position evidence development and application as natural outgrowths of clinical care—to foster health care that learns.

Approach: The IOM Roundtable on Value & Science-Driven Health Care serves as a forum to facilitate the collaborative assessment and action around issues central to achieving the vision and goal stated. The challenges are myriad and include issues that must be addressed to improve evidence development, evidence application, and the capacity to advance progress on both dimensions.

To address these challenges, as leaders in their fields, Roundtable members will work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possible solutions, and the priorities for action, and will marshal the resources of the sectors represented on the Roundtable to work for sustained public–private cooperation for change. Activities include collaborative exploration of new and expedited

Approaches to assessing the effectiveness of diagnostic and treatment interventions,

better use of the patient care experience to generate evidence on effectiveness, identification of assessment priorities, and communication strategies to enhance provider and patient understanding and support for interventions proven to work best and deliver value in health care.

Core concepts and principles: For the purpose of the Roundtable activities, we define evidence-based medicine broadly to mean that, to the greatest extent possible, the decisions that shape the health and health care of Americans—by patients, providers, payers, and policy makers alike—will be grounded on a reliable evidence base, will account appropriately for individual variation in patient needs, and will support the generation of new insights on

clinical effectiveness. Evidence is generally considered to be information from clinical experience that has met some established test of validity, and the appropriate standard is determined according to the requirements of the intervention and clinical circumstance. Processes that involve the development and use of evidence should be accessible and transparent to all stakeholders.

A common commitment to certain principles and priorities guides the activities of the Roundtable and its members, including the commitment to the right health care for each person; putting the best evidence into practice; establishing the effectiveness, efficiency, and safety of medical care delivered; building constant measurement into our healthcare investments; the establishment of healthcare data as a public good; shared responsibility distributed equitably across stakeholders, both public and private; collaborative stakeholder involvement in priority setting; transparency in the execution of activities and reporting of results; and subjugation of individual political or stakeholder perspectives in favor of the common good.

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