Collaborative Voices for Healthcare Reform

Join the Signatories Today!

2009-07-13T09:00:00.006-04:00

Please join us in sending a unified message to the Administration and Congress. We know that in past attempts for health reform, the competing special interests of many has stymied the cause. We chose to stand together this time.

Join more than 100 groups listed below by emailing healthreform@geneticalliance.org, before noon on July 15, 2009 to sign on the the healthreform principles. We will compile principles, examples, and signatories for delivery to Congress and the Administration during Genetics Day on the Hill on July 16, 2009.

1in9, The Long Island Breast Cancer Action Coalition
23andMe
5p- Society
AA CSA Foundation
ABQ Associates, Inc
Accord Alliance
Alliance for Aging Research
Alpha-1 Advocacy Alliance
Alpha-1 Association
Alpha-1 Foundation
Alström Syndrome International
Alzheimer's Pakistan
American Association for Cancer Research
American Self-Help Group Clearinghouse
American Sleep Apnea Association
Androgen Insensitivity Syndrome Support Group USA
Angioma Alliance
ARPKD/CHF Alliance
Associação Brasileira dos Portadores da Doença de Gaucher
Associação X Frágil do Brasil
Association of Gastrointestinal Motility Disorders, Inc.
Autism Society of America
Beyond Batten Disease Foundation
Brazilian Genetic Alliance
Breast Cancer Network of Strength
BVVL International
CareTALK, LLC
CHARGE Syndrome Foundation
Children's Sickle Cell Foundation,Inc.
Claire Altman Heine Foundation
Coalition for 21st Century Medicine
Coalition for Heritable Disorders in Connective Tissue
Coalition for Pulmonary Fibrosis
Costello Syndrome Family Network
CryerHealth
Cutaneous Lymphoma Foundation
Cystinosis Research Network
Detroit Medical Reserve Corps
DNA Direct
Dubowitz Syndrome Family Support
Dystrophic Epidermolysis Bullosa Research Association
Ehlers Danlos National Foundation
Everyminute.org
Family Voices
Family Voices of California
FasterCures
Fight ALD
Foundation for Ichthyosis & Related Skin Types, Inc.
Foundation for Prader-Willi Research
Foye Myopathy Project
Friedreich's Ataxia Research Alliance
Genetic Alliance
Global Sickle Cell Alliance, Inc
Hannah's Hope for Giant Axonal Neuropathy
Hereditary Angioedema Association
Hereditary Disease Circle
Hereditary Spherocytosis Support Group
HHT Foundation International
HumanGeneticsDisorders.Com
Hypertrophic Cardiomyopathy Association
Immune Deficiency Foundation
In Need Of Diagnosis, Inc.
Informed Medical Decisions, Inc.
Inspire
Institute for Cultural Partnerships
Kids With Heart National Association for Children's Heart Disorders, Inc
Life Sciences and Society Program, University of Michigan
Lung Cancer Circle of Hope
Lymphatic Research Foundation
MHE Research Foundation
MLD Foundation
Muscular Dystrophy Association
Myelin Project
National Eczema Association
National Fabry Disease Foundation
National Foundation for Ectodermal Dysplasias
National Gaucher Foundation
National Marfan Foundation
National PKU Alliance
National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)
Nature Genetics
NBIA Disorders Association
Neighborhood Interactive Cultural Exchange
NOMID Alliance
Northern Nevada Genetic Counseling
Pachyonychia Congenita Project
Pacientes de SIDA pro Politica Sana
Parent Project Muscular Dystrophy
Platelet Disorder Support Association
Positive Exposure Productions
Prader-Willi Syndrome Association (USA)
Praxis Project
Progeria Research Foundation
Prostate Cancer International
Pull-thru Network, Inc.
PXE International
Research Advocacy Network
Rett Syndrome Research Trust
Scleroderma Foundation
Shwachman Diamond Syndrome Foundation
Southwestern Oklahoma State University
Stennis Foundation
Strategic Health Policy International
Sudden Arrhythmia Death Syndromes Foundation
Syndromes Without A Name USA
Technic Solutions, LLC
Thalassaemia Society of Pakistan
Tuberous Sclerosis Alliance
United Mitochondrial Disease Foundation
Vasculitis Foundation
Wilson Disease Association
www.mpdsupport.org
XLH Network, Inc.

Principles for Comprehensive Health Reform

2009-06-29T14:12:00.019-04:00

The final principles developed by meeting participants were vetted by more than 100 coalitions, organizations, and companies.

Read the text below and email healthreform@geneticalliance.org to sign on in support of these principles.

It is imperative that we engage in health reform, not just healthcare reform. In order for this transformation to be comprehensive, actionable, and sustainable, it must look at health as a continuum. Five main areas serve as the pillars of an effective health system: access, economics, delivery systems, patient empowerment, and the research-to-care continuum (see figure below). For a more in-depth look at the five areas identified as the pillars for an effective health system click here or see the five previous posts tagged 'final principles.'

Cross‐cutting principles:

A number of core principles emerge from these five areas. It is critical to remember that these areas, just as the fields that impact them, cannot function independently. They must be connected to create the change we seek.

Ultimately, each of us is responsible for the health system, and in it, our own health.
The health system must be consumer/patient‐centered.
Education and empowerment of individuals, families, communities and their healthcare providers is critical, particularly in underserved communities.
Creation of standards, and coordination of systems and stakeholders is key.
We must achieve a balance of proactive and reactive care throughout the lifespan.
Emphasis of care should focus on quality of life and medical benefit, not only extension of life.
Opportunity for innovation must be incorporated into each facet of the health system

We have an unprecedented opportunity to shape the health system of this nation. Working together, and not in competition with one another, we can achieve great things. Ultimately, our health is up to each one of us, and we need a health system to support us.

Share your comments and support below. Remember to email healthreform@geneticalliance.org if your organization intends to sign on to these principles. Read the in-depth descriptions of each area and share your real-life examples of each principle below.

Access Principles: Share Your Story

2009-06-29T13:00:00.003-04:00

The final access principles identified and reviewed by the meeting participants follow:

Create universal access to optimal care that provides an established benefit to individuals, families and communities.

Access must be viewed from multiple angles—including (but not limited to) language, location, culture, type of disease, literacy, complexity of decision‐making, and finances—all of which contribute to the provision of optimal care. Optimal is defined as appropriate, efficient, and timely care based upon personal and familial medical history and genetic information. Care should include prevention, diagnosis, and treatments that balance quality of life and medical benefit. We must not only give access, but also help individuals understand their access.

To achieve optimal care, we must:

Create a flexible system of evidence‐based medicine that allows for innovation in the evidentiary standards that define benefit
Ensure that all individuals have a role in their clinical decision‐making
Make credible, culturally appropriate, information freely available to patients and providers on evidence around treatments, treatment options, support, resources, and options for delivery of services
Help patients and providers use this information to make informed decisions about appropriate care, course of treatment, and health decision‐making
Provide tools and resources to help all stakeholders navigate the medical system and understand health information with the goal of creating an intuitive system that eliminates the need for such tools
Ensure health literacy is an integral part of the educational system

Please share your real-life examples of these principles in the comments section below or email them to healthreform@geneticalliance.org.

Economic Principles: Share Your Story

2009-06-29T12:55:00.004-04:00

The final economic principles identified and reviewed by the meeting participants follow:

Realign financial incentives to center on the health of people.

The health system must carefully consider economic rewards and penalties. These financial incentives provide more than just direct motivation for patients and providers, but also mirror what we view as the priorities for the system. As such, financial incentives should be fundamentally realigned to support prevention, and focus on the highest quality care for individuals, families and communities. Coordination, innovation, and coverage should all be thought of in terms of the health of the individual. Costs and profits must be viewed from within this framework.

To put patients first, we must:

Establish a clear minimum standard for coverage and care
Educate patients and their caregivers on efficiently navigating the health system
Enhance investment at the point when individuals enter the medical system to balance with end of life care
Incentivize healthcare providers’ time with the patient
Incentivize coordination of systems and fields
Fuel and reward innovation in research and healthcare to encourage further investment

Please share your real-life examples of these principles in the comments section below or email them to healthreform@geneticalliance.org.

Delivery Systems Principles: Share Your Story

2009-06-29T12:50:00.003-04:00

The final delivery systems principles identified and reviewed by the meeting participants follow:

Coordinate delivery across all spectrums of care.

Individuals are desperately in need of support systems that are interconnected and accessible. Health must be understood across the spectrum, focusing on wellness and not on sickness. From prevention to acute care, and from primary care to specialty care, existing systems must be coordinated. Not only will coordination allow better flow of information and lower costs, but it will also provide much needed accountability.

To coordinate care, we must:

Resolve provider workforce issues with energy and creativity
Provide education that encourages accountability among providers and patients
Create a feedback loop to assess the effectiveness of both financial and behavioral incentives to improve delivery systems
Create standards for health information to be safely shared between providers and patients and among providers
Use health information technology to improve access to information and balance privacy and confidentiality of data

Please share your real-life examples of these principles in the comments section below or email them to healthreform@geneticalliance.org.

Patient Empowerment Principles: Share Your Story

2009-06-29T12:45:00.003-04:00

The final patient empowerment principles identified and reviewed by the meeting participants follow:

Create an individual sense of ownership and responsibility for health and wellness.

The healthcare system continues to move further away from the concept of individual ownership and responsibility. A reformed health system must center on the individual and as an active participant in his/her healthcare. This can be achieved through access to information, novel use of technologies, and a healthcare system that incentivizes proactive individuals in the context of their family and/or community.

To empower patients, we must:
Integrate health education at every life stage and every stage of medical care
Encourage a team‐based approach to healthcare with valued provider‐patient time
Incentivize wellness and individuals’ proactive engagement in his/her own health
Take advantage of new technologies, personalized medicine, and family history to concretely connect an individual to his/her own health
Educate the general public about the value of clinical trials in an effort to improve engagement, recruitment, and retention efforts
Provide individuals with access and clear understanding of their medical records

Please share your real-life examples of these principles in the comments section below or email them to healthreform@geneticalliance.org.

Research-to-Care Continuum Principles: Share Your Story

2009-06-29T12:40:00.003-04:00

The final research-to-care continuum principles identified and reviewed by the meeting participants follow:

Link the research and healthcare systems and increase research focus on quality of life and health outcomes.

A long‐term investment in research is integral to a successful health system. Investment in research will ultimately save dollars and stimulate the economy. In addition, concrete benefits in quality of life and standards of care are accrued. It is important for the research enterprise to be more closely aligned with health and healthcare both in terms of more targeted development of treatments and better application of existing services.

To focus research, we must:

Implement and integrate comparative effectiveness research and personalized medicine together
Increase research on wellness and prevention and make results from failed research available
Implement health information technology solutions to create a feedback loop from research to care and care to research
Develop guidelines for public‐private partnerships regarding proprietary information sharing, privacy, confidentiality, and incentives
Create a clinical trial system that is accessible to potential participants, including access to compassionate use
Develop evidentiary standards for clinical research

Please share your real-life examples of these principles in the comments section below or email them to healthreform@geneticalliance.org.

Overarching Principles and Discussion Text

2009-06-22T17:36:00.003-04:00

After collecting all of the transcripts, blog comments, and tweets, we had over 70 pages of text rich describing the meeting! During the past few days we boiled them down to the overarching principles and key discussion points. The document summarizing these points from the meeting is now available for download. Read and comment today!

Keeping the momentum

2009-06-18T19:08:00.008-04:00

The meeting yesterday was incredibly successful—what a collaborative effort! Each of the co-conveners thank you for all you brought to the meeting both on-site and online.

Now, we want to we can keep the momentum going! We have created a listserv for meeting attendees to communicate about health reform in the future. If you were unable to attend the on-site meeting but would like to be included in the listserv, simply send an email to acornell@geneticalliance.org.

We will use the following process to follow up with the energy from the meeting:

Determine common principles based on the principles identified by each small group discussion.
Compile all text from the meeting; including blog entries, comments, Twitter postings, and group transcripts. (All of this information will be completed by Monday, June 22, 2009).
Explain common principles by providing real-life examples as given in the text from the meeting. We will send this information to all meeting participants on the afternoon of Monday, June 22, 2009 and allow a few days for comments and revision of the principles.
Revise the principles based on the comments.
Send the principles out widely for organizational sign on (with about 1 week for turnaround).
Send the principles to policy makers and to the presidential administration.

If you are willing to serve on a work group dedicated to the above tasks, please contact acornell@geneticalliance.org.

Continue to share your thoughts and ideas here as we move forward together!

Timely Article by CNN Health

2009-06-18T10:40:00.003-04:00

CNN Health wrote an article today on health reform: What you need to know about health care reform

"You heard a lot about health care reform this week, and you'll be hearing even more in the months to come. It's an incredibly confusing, complex issue, so in this week's Empowered Patient, we break it down for you with 10 frequently asked questions about health care reform."

What are some of the other questions you frequently ask yourself when thinking about this complicated topic?

Discussing Next Steps

2009-06-17T15:55:00.000-04:00

Based on the principles identified in the group discussions. We're going to identify next steps following this meeting and themes throughout the small group principles.

What themes do you see in the small group principles identified in the posts below?

Patient Empowerment Discussion Principles

2009-06-17T15:35:00.000-04:00

The patient empowerment discussion landed at the following principles:

Health and wellness
Self-care
Having the appropriate policies in place to empower and inform patients
Train patients and their staff on the importance of healthcare and outcomes
Our immediate networks are important
Team-based approach to health and empowerment
Train and empower patients to be involved on the research end
Education should be a part of every stage of the healthcare system and in our daily lives
As the health reform conversation continues more focus on personalized medicine can inform health outcomes
De-stigmatize
Incentivize physicians

What are your thoughts on these principles?

Access Discussion Principles

2009-06-17T15:26:00.000-04:00

The access team identified the following principles:

Universal access to optimal care
Personalized medicine
Informed decision about appropriate care included in health decision making and for help in informing patients on lifestyle choices
Education materials following the tenants of good health communication
Patients and providers should have research imfortmation readily available
Not just as access but healping people learn how to next step beyond having access
Affordable bio-generic drugs
Health education
Health-literacy
People taught how to navigate health system

What would you like to add to this disussion?

Delivery Systems Discussion Principles

2009-06-17T15:17:00.000-04:00

The delivery systesm team identified the following:

Meeting half way to coordinate what are appropriate measures for accountability and how that will be implemented
Coordinating care
Support policies that facilitate portability that works together with information systems and the standards for those systems
HIT must not just shift the venue, but improve access to information, while balancing self-selected privacy
Eliminate community rating in insurance principles
What are the incentives toward wellness and how can we encourage that
How can we incentivize providers staying updated on research and treatment
Centralized consumer feedback portal on providers
Standardize provider-payer process

What is missing here?

Research Discussion Principles

2009-06-17T15:10:00.000-04:00

The research team summarized the following principles from their discussion:

Long-term investment in research
Comparative effectiveness as a tool for personalized medicine
Develop guidelines that foster public-private partnerships
Provide incentives for the private sector to get involved in research
Have an expansive view of the healthcare systems (including HIT, clinical trials, treatment development, etc.)
The importance of studying the impact of healthy lifestyles and their impact on health outcomes
Risk-taking research
HIPPA as it relates to the stimulus package
Privacy
Patient access to compassionate use

What else would you like to add to the discussion?

Economic Discussion Principles

2009-06-17T15:05:00.000-04:00

This is the summary of the economic discussion principles:

Aligning incentives in the health care system to benefit the patient
Coordination of system and HIT
Fueling innovation
Who pays for health reform vs. who is able to reap the benefit
Covering everyone with minimal standard
Overcoming vested (sometimes private org.) interest for public good
Understanding how public-private investments
How can industry organizations balance the investment vs. return, business
model, with attaining the maximum benefit for patients
Accepting personal responsibility requires understanding the system

We wanted to get more into employer-based coverage and mobile coverage as a means for improving access.

What would you like to add to these principles?

Summaries of Group Discussion Principles

2009-06-17T15:00:00.000-04:00

The next posts will give a top-line summary of the principles that each of our small group discussions on:

Economics
Research-to-care Continuum
Access
Delivery Systems
Patient empowerment

What do you think about the principles brought up

Break 2

2009-06-17T14:55:00.000-04:00

Taking another short 5 minute break. Come back for summaries of the principles each smalll group has identified. Your comments are being shared live at the meeting.

Research-to-care continuum: Small Group Discussion Post 4

2009-06-17T14:53:00.001-04:00

Here is our summary of themes!!!
1. CER will foster personalized medicine, they are not at opposite ends of spectrum
2. Continual need to look at privacy, but not be a barrier
3. Health IT – embed in system to enable research among other reasons!
4. Funding for Research
5. Developing Public-Priavte Partnerships – guidelines and incentives needed
6. QOL vs. extension of life
7. Prevention research, including nutrition and lifestyle
8. Research on failed research
9. Access to clinical trials
10. Long-term investment in research to save money and stimulate economy
11. Evidentiary standards in clinical reserach

Access: Small Group Discussion Post 2

2009-06-17T14:50:00.000-04:00

Defining access to healthcare

We determined that what we REALLY mean when we say “access to healthcare” is that we want access to optimal care—optimal care being care that is beneficial to the individual, both in terms of medical and quality of life benefits. We struggled in pulling apart the balance between relying upon proven methods or evidence-based medicine and facilitating and driving innovation. That balance is crucial. We must move beyond saying everyone should be "covered" to ensuring that the coverage gives them access to optimal care.

How did we do?

Reserach-to-care continuum: Small Group Discussion Post 3

2009-06-17T14:42:00.000-04:00

Adaptable clinical trials are an exciting opportunity, but federal agencies working in this areas need to coordinate and collaborate. What about a trial that is not successful by an initial protocol definition, but DOES show a treatment works for a key subset of patients, should that trial, that valuable information, that research, those efforts and resources be considered a waste? Should the researchers have to start from scratch, wasting time, and money that patients in need can not afford to lose.

Regarding encouraging clinical trial participation, there is so much we can do! Working with patient communities to identify and break down barriers is crucial, but so is working with providers to encourage them to engage their patients in research opportunities. Researchers must also be encouraged and continuously strive for quality and efficiency in their work.

Ecomomics: Small Group Discussion Post 2

2009-06-17T14:39:00.000-04:00

The group is now discussing:
How do we financing the backend of health?

A participant said, "...as a guiding principle you could say you can identify common sense modifications to practice in our healthcare system". Where common sense is not the standard of care, how do we make clear cut beneficial innovations?

What is at the core of the cost of healthcare?
Should everyone in the U.S. system have coverage not necessarily insurance but have a standard minimal of care?
Are we shifting behavior, predicting disease, and preempting that disease or disability?
What are we doing to start with the next generation?
How long will it take for benefits of health reform to shift to our everyday lives?

Patient Empowerment: Small Group Discussion Post 2

2009-06-17T14:36:00.000-04:00

We are discussing individual responsibliity in health care. Some really good ideas have been thrown out. We think that it is critical to encourage early involvement in personal wellness. This is a process that begins early in life, in childhood when many lessons are learned. Schools and families have the potential to greatly impact how children look at their health. We think that patient empowerment needs to be a focus that is stressed by schools and maybe even placed in a curriculum. This empowerment should extend past formative years and into college and even adult school. Another important part of individual responsiblity is the relationship between patient and doctor. There needs to be a culture change not only to encourage patients to take a greater role in their care but also to encourage doctors to involve patients.

Some core principles we have discussed and agree upon:
individual responsibility, empowerment of patients at research end, early involvement in care, doctor-patient relationship, personalized medicine, role of technology, prevention and wellness.

Question for everyone: what do you think that patients should be able to control?

Delivery Systems: Small Group Discussions Post 2

2009-06-17T14:35:00.000-04:00

In the breakdown of topic areas the Delivery Systems working groups is breaking apart accountability for patients and providers. There is consensus that the topic is multifaceted and includes patient/provider education about health and wellness, as well as incentives to engage in educational programs. The discussion has been formed around the question: if health outcomes are not enough to incentivize healthy living then what is?

Research-to-care Continuum: Small Group Discussion Post 2

2009-06-17T14:15:00.001-04:00

Biomarkers will continue to tease out subgroups of disease populations, will this save costs if we don’t use it in those who is doesn’t work for? But what can you do for those patients? Our culture is that you have to do something!!! So, do we need ot look more at what other interventions can do, such as lifestyle interventions? How can we incorporate that into clinical trials and research in general. Ideally the research-care continuum would not neglect those for who a treatment does not work for, but seek to figure out WHY it doesn’t work for them, and help us learn what we CAN do for them.

Delivery Systems: Small Group Discussion

2009-06-17T14:15:00.000-04:00

The Delivery Systems working group will be defining principles based on high-level thinking surrounding accountability, perverse incentives, coordination of care, portability, and preventative care. The group will use health outcomes as a metric when developing principles based on all of these topics. Input from online participants is welcomed an encouraged.

Economics: Small Group Discussion

2009-06-17T14:11:00.000-04:00

After introductions, the group discussed some of the barriers in the current healthcare system as they relate to economics.

Participants were mainly concerned that incentives are perverse in the current system; monetary goals leave so many without care or without the most appropriate care for their condition. Access, quality of care, and location are additional variables that impact our ability to have an effective health care system.

Aligning incentives to reach the best outcomes for the patient is what we need to in health reform.

Next, we'll discuss how we get to more effective and economically efficient means of healthcare deliver.

Patient Empowerment: Small Group Discussion

2009-06-17T14:10:00.000-04:00

Hi from the small group on patient empowerment. We are going around discussing some core principles of patient empowerment. Some issues that have come up:

having the tools to make decisions for yourself
having the right information to make those decisions
owning your own health care
patient involvement and input from the beginning of care
education

On the issues of education and involvement, there is a lot of emphasis being placed on the self-education and self-involvement on the part of the patient. There are many good and valuable resources out there - internet, TV, etc - with which patients can educate themselves.

Discussing basic ways to implement patient empowerment. Do we need to reinvent the wheel? In many cases we do not as there are a lot of good policies out there already in existence. An emphasis on best practices could be extremely useful here.

Thoughts? Suggestions?

Access: Small Group Discussion

2009-06-17T14:07:00.000-04:00

What does access MEAN?

Right now we are brainstorming around “what does access MEAN?”—are we discussing access to healthcare, access to information, or both? And in what contexts? Access to information includes dissemination of information to patients and consumers, but also enhancing communication channels between researchers and other stakeholders who rely upon that information. A major sticking point for us now is access to healthcare—what do you think?

Research-to-care Continuum: Small Group Discussion

2009-06-17T14:02:00.000-04:00

We are having a very interesting discussion with a good variety of stakeholders on the research to care continuum. Is the ideal system like an infinity loop where research constantly flows to care and care constantly flows to inform new and novel research? Is it a cycle that never ends?

Regarding Comparative Effectiveness - we are discussing a CER system that benefits all but will not leave out or lead to no treatment for those whom the recommended treatment does not work in. CER and Personalized medicine can feed and foster each other.

Group Discussion

2009-06-17T13:57:00.000-04:00

We have broken into smaller groups to discuss the following topics at length:

Economics
Access
Delivery systems
Research-to-care continuum
Patient empowerment

Each topic has a team and a blogger. Check for posts from each team. Post your comments for topics you want to discuss in each team. Access is the largest team. Economics is the smallest team with 10 participants.

Contribute your thoughts and we'll share them on each topic and that blogger will lend your voice to the team.

Final Health Systems to Discuss in Small Groups

2009-06-17T13:55:00.000-04:00

Our final five systems to discuss in the context of health reform, which we'll discuss in smaller groups include:

Economics
Access
Delivery Systems
Research-to-care continuum and wrap around/innovative research
Patient empowerment

We have agreed to discuss the overarching considerations in each of these overarching themes:

Quality
HIT
Technology beyond HIT
Prevention and not just care
Continuing care,
Risk
Waste
Culture change

Next we'll break into five smaller groups to discuss these topics in detail. Bloggers will be paired with each group to give you updates and infuse your comments into the discussions.

What Overarching Themes Have Emerged?

2009-06-17T13:43:00.000-04:00

Here are the initial themes we identified at the meeting:

Research
Access to information
Technology
Incentives
Systems of care
Health, wellness, prevention
Money, affordability, costs
Access for underserved populations
Money
Quality
Incentives

We're moving forward to get these themes into a smaller number of topics to discuss. How would you group these?

Break

2009-06-17T13:00:00.000-04:00

Taking a 5 minute break for refreshments. Live blogging from bloggers in each break out group next!

Moving from Topics to Themes

2009-06-17T12:56:00.000-04:00

How can we move from the broad topics listed below to viable overarching topics that we can discuss more in-depth?

We're breaking the topics below into common themes. What common themes do you see?

We’re sharing your commentary with the meeting participants in live time.

Brainstorming Topics Part 3

2009-06-17T12:55:00.000-04:00

Comparative effectiveness and personalized care
Home health
Diagnostic testing
System that foster innovation for new test technologies and treatment
Economic chronic healthcare
End of life care
Bridging the gap between academia and industry
Health Information Technology

Keep your comments coming! We're checking to be sure your ideas are included in the meeting.

Brainstorming Topics Part 2

2009-06-17T12:54:00.000-04:00

Brainstorming Topics to Discuss

2009-06-17T12:45:00.000-04:00

Participants are sharing their concerns in health reform and voicing their opinions for topics we should discuss today here's the first few minutes of topics:

How will I afford my health insurance?
What will happen if I get sick?
Short term vs. long term concepts
Health reform vs. healthcare reform
Pricing disparities in insurance across age groups
Access of rare disease groups to specialists
Prevention and access to quality care
Implementing preventive care
Better medical and health education
Costs of chronic disease and chronic care

What topics do you want to add to the brainstorm? Comment below!

Introductory Remarks

2009-06-17T12:20:00.000-04:00

Opening remarks at the meeting have begun. There are about 75 advocates present representing a range of industry, nonprofit, and association representatives. We’re ready to have a free flowing brainstorming on a high level to talk about what are our internal concerns are, as an example of things we want to change in health reform.

What topics do you want to discuss today? Post your comments below! Anything relevant to health and health reform is open for discussion.

Agenda: Urgent Meeting on Healthcare Reform

2009-06-17T11:30:00.000-04:00

The Time is Now: Finding our Collective Voice
Meeting Agenda
Wed., June 17, 2009
12-4pm

12:15 Introductions
12:30 Background: How we got here
12:35 Coming Together in Openness
12:45 Large Group BRainstorming
1:30 Identifying Themes and Form Work Groups
1:55 Break into Work Groups
3:00 Reconvene in Large Group and Share Principles
3:45 Next Steps
4:00 Adjourn

Including Research in Reform

2009-06-17T08:48:00.000-04:00

Right now of every dollar spent on health care only 5.5 cents is spent on finding new solutions. We look forward to research being part of this discussion and the national debate on health reform.

Lives and Livelihoods are on the Line

2009-06-17T06:46:00.000-04:00

by Margaret Anderson, COO, FasterCures

For the past three weeks, the nation's policymakers have turned their attention to healthcare. It seems like each day featured a seminal study, a pivotal finding, a fresh perspective. National statistics and budget forecasts are strengthened by stories from the frontlines. Patient-centered care. Comparative effectiveness. Cost. Private vs. public plans. Government option. Access. Quality. Affordability. Incentives. Health reform's steady drumbeat is at its crescendo.

We at FasterCures stand at the ready to support efforts that hold the potential to fixing what we all know is a broken, unsustainable healthcare system. Our medical research enterprise and the life sciences industry - the forces behind medical innovation and progress - are at stake. Today, we join other health advocates in an effort to ensure that the health reform conversation continues to focus on improved health and an opportunity to gain access to care for individuals, families, and communities. Forty-five million Americans without health insurance is not just a factoid, it's the reality that face Americans whose lives and livelihoods are on the line.

Fixing America’s broken healthcare system is a crucial step toward fixing America's broken healthcure system. Only if we translate promising scientific research into new treatments will we have any hope of reducing healthcare costs, productivity losses, and human suffering.

High Expectations

2009-06-16T21:10:00.000-04:00

The Coalition for Affordable Health Coverage is extremely pleased to be participating in this special event and we are looking forward to a productive and informative discussion. We hope that all of our unique experiences will help to inform the ongoing debate on health care and broad reform.

Below is some information on our Coalition and what we stand for.

Who We Are

The Coalition for Affordable Health Coverage is a broad-based group with a singular focus: making health coverage more affordable for those who currently have coverage as well as for those who do not.

Our membership is diverse: it includes organizations representing physicians and hospitals, small businesses, large employers, insurers, brokers and agents, consumers, and others who share our view. Because we work in the marketplace, we know what works and we want to improve upon it. In short, as Congress turns to health care reform, we will advocate for more - and more affordable - options for coverage.

What We Stand For

Our members stand by the following principles, each of which is dedicated to greater affordability of private-sector health coverage:

Support market-oriented approaches and tax incentives or other subsidies to promote affordable health coverage for all, including the uninsured.
Support effective, affordable options for those with high-cost, catastrophic or chronic uninsurable conditions.
Support flexible policies that allow individuals and businesses to choose health coverage that best meets their needs.
Support initiatives and innovations that promote high-quality care and that foster and enhance a more competitive market for health coverage.
Support policies that ensure consumers are equipped with essential comparative information on the price and quality of health care services in order to make sound purchasing decisions.
Empower consumers to take actions that encourage wellness, promote prevention, and permit saving for future health needs.

Follow the Meeting on Twitter

2009-06-16T12:04:00.000-04:00

In addition to using this blog for virtual participation, you can follow the meeting conversation on Twitter! Follow and contribute to the conversation by using hashtags #healthreform and #hcrmtg for your tweets.

Infuse Openness, Diffuse Special Interest

2009-06-16T09:17:00.000-04:00

In order for us to have a DIFFERENT conversation on health reform, we need to dive into the core and reveal the truth in our experiences and vision for the future. We will push ourselves, and each other to peel back the layers of the sound bites that have dominated the discussion on healthcare reform.

Above all, we must recognize that the process we will share in working toward these answers will be just as, if not more valuable, than other outcomes from the meeting. We will come together, abandoning turf to revolutionize health systems, and model what we seek in healthcare reform.