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.