Join the Signatories Today!

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

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

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

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

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

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

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

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

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:

1. Determine common principles based on the principles identified by each small group discussion.
2. 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).
3. 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.
4. Revise the principles based on the comments.
5. Send the principles out widely for organizational sign on (with about 1 week for turnaround).
6. 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

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?