How to make it happen
Do you think you could find two people besides you who think clearly enough to see beyond system-tweaking and trying to change attitudes or behavior - two people who understand how checks and balances could change the world around medicine so that medicine would have to clean itself up in response? No one in medicine ever will suggest that or provide it. They will work against it. So patients have to do it.
Creating a State Patients Board is different than creating a Community Patient Agency. Creating a State Patients Board would require perhaps three people with the skill to do what is necessary to get one state legislature to authorized the creating of a State Patients Board that has the authority to accept complaints and send them to the appropriate agencies, and has the authority to see all the records that those other agencies have so that it can track what happens to the complaints and advocate for patients when nothing is done. The state patients board would need to be independent enough to decide on its own to do things like have legal counsel attached who can advise patients on things like the fact that no matter how much they rattle their swords risk management cannot sue a patient for filing a complaint with the appropriate authority. The state patients board needs to have more such attributes than will fit in this paragraph, but that only are the same as what doctors can get through their state medical boards. Patients deserve to be able to get help from people who are on their side too.
Right now in California people are calling to have the doctors removed from the board of directors of their state medical board for failing to protect patients. Those people don't understand the problem and therefore don't know how to solve it. Even with all new people on the board the agency still will be full of people who advocate for health care professionals. And the patient community needs them to be doing that for a host of reasons that don’t fit in this paragraph.
Checks and Balances
What is missing is the counterpart for patients. Patients have no dog in the fight. Patients need the same kind of board on their side. We need to put together a knowledgeable group of people to form a good plan, raise funding, create a PR campaign to create some awareness, and then knock on the doors of state legislators to garner support for this. The legislators need this too. Right now if a constituent calls them asking for help because something horrible was done to them in medicine, the legislator has no one to call who can help that voter. And their job is to help voters.
The press needs this to exist too. Right now there is no one official they can call to get the patient’s view on issues. There is no one for a government representative to call to find out if the patient community agrees with whatever self-serving nonsense the medical community is trying to get passed into law now.
There is no point in getting signatures on a petition for something like this if the legislators are not already on board with a solid plan that sensibly can become a matter of law. They only will have to vote it down otherwise. But it does need voters behind it, which means giving speeches at every opportunity to any group that will listen.
People are not nearly as good at starting new things as they are at copying things others have done. Once this has been done in one state, other states will be able see it, see why it is necessary, what it does and how to do it where they are. It will be about 20% as hard to do it the second time. And the third. And the fiftieth.
It could be started with only three people: a fundraiser, a policy wonk, and a manager/recruiter type. If none of them also are credible presenters, then one of those needs to be found immediately. There needs to be at least one person who looks and sounds as credible and as articulate as the most socially adept physician, because that is who is going to step in to persuade supporters that you are nuts and they are saints. It would be better if all three of these first people were persuasive enough for any journalist or legislator or funder to see that compared to these people the perspective of medicine is myopic and self-interested. The first three not only must have the best interest of patients at heart, but must look like it in order to overcome the credibility of anyone with a medical degree trying to undermine them.
There is money out there earmarked for projects like this. For instance this grant from the White House (links to their site).
Patients need both Community Patient Agencies and State Patients' Boards, but only the State Patient Boards require authorization from the state. Community Patient Agencies do not need the support of voters and legislators. But they do need to put together by people who know what "start ups" need to know - how to recruit fund raisers and then use those funds to recruit and manage data crunchers and medical investigators, as well as garner the interest of insurance companies to get help from some of their resources.
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