What we are changing
Yes, it is a big list of big things. But this is simply what is needed to make health care what it could and should be. If "we the people" can build the greatest country the world has ever known, "we the people" can certainly build a common sense, open-source health care system that works well for all. Be part of making the world a much better place as a member of Patients United.
1. Patient Advocacy/Representation
- No healthcare without patients involved in how it works, everywhere, “nothing done to me without me”.
- Advocacy and representation of patients at federal, state, and local levels.
- Discounted resources and services to support problems with health care (by itself worth more than the membership contribution for most).
- Putting people back in charge of their lives and health - having more control in what is paid for and what is not.
2. Patient-centric medication
- Medication cost reform - price-gouging is totally out of hand and harming patients, U.S. citizens pay far more than the citizens of other countries for the same medications and this needs to be remedied.
- Facilitate the development of non-medication treatment options.
- Medications delivery reform. For example, why do we have archaic DOS computer like medication labels in the era of smart phones?
3. Patient-centric doctors/providers
- Patient-designed doctor of the future. Medical and healthcare training reform to be in best interest of patients, and produce humane providers able to leverage the artificial intelligence and robots for patients and do what only a human being can do.
- Medical education reform to be humane and not beat the humanity out of those who will be caring for us.
- Doctors freed to care for patients. Doctors cannot be used to do insurance company or bureaucracy paperwork but must be protected as patient advocates and enabled to spend their expertise and energies benefitting patients.
4. Patient-centered business reform
- Changing and managing profit motives that create non-patient-centric incentives.
- Giving patients more and more control about how (their) dollars are spent.
- Transparency on cost and quality. This is the only way real-world business can work and that healthcare business will come into line with supporting patient-centric care.
5. Patient-centric innovation
- Incubator/accelerator for patient-derived solutions and products.
- Changing the incentive structures to fuel the full spectrum of best treatment options (not just patentable medications).
6. Patient-centric research
- Patients collectively taking charge of the information/data, functionally owning it.
- Patients directing how government research dollars are spent.
- Patients having researchers working directly for them.
- Patients determine what research happens, when it happens, funds it, make the results public in real time.
- Change laws/practices in U.S. to not allow shady business-influenced research practices.
- No locking up the information/data behind paywalls for profit, must be publicly owned and accessible.
7. Patient empowerment
- Training patients for participatory activism.
- Actually designing a health care system — by patients and seeing that elected representatives support it and implement it.
- Cultivate innovation instead of stifling it.
- Insisting on a different paradigm of care that is “wholistic” and not just pills and procedures for symptoms and consequences.
- Regular updates, projects, research to participate in, where and how to express your patient perspective.