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?
Wednesday, June 17, 2009
Patient Empowerment Discussion Principles
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
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
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
The research team summarized the following principles from their discussion:
What else would you like to add to the 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
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
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
Economics
Research-to-care Continuum
Access
Delivery Systems
Patient empowerment
What do you think about the principles brought up
Break 2
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
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
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
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?
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
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.
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
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?
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
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?
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
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
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
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
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.
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
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:
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?
- 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
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
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?
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
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.
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
We have broken into smaller groups to discuss the following topics at length:
Contribute your thoughts and we'll share them on each topic and that blogger will lend your voice to the team.
- Economics
- Access
- Delivery systems
- Research-to-care continuum
- Patient empowerment
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
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
- 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?
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
Break
Taking a 5 minute break for refreshments. Live blogging from bloggers in each break out group next!
Moving from Topics to Themes
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.
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
- 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
More topics include:
- Standardization and evidence based care in general medical practices
- Liability in medical care
- Allied care
- Defensive
- Medicine
- Clinical trial recruitment and participation
- Personal responsibility and involvement in healthcare
- Health IT
- Incentives for stakeholder, how to study, understand and influence
- Solving problems in health and feedback loops
- Comcepts of payment
- Coordination of care
- What do we care about in terms of coverage?
- Linking research to better health treatments
What topics do you want to discuss in health reform? Put your topics in comments below...
Brainstorming Topics to Discuss
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
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.
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
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
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
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
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.
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.
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