Informing Patients about Accountable Care Organizations (ACOs)

A. SUPPRESSION OF PUBLIC INFORMATION

Many doctors, hospitals, therapists, etc. have joined Accountable Care Organizations (ACOs). These have important features which patients need to understand. However Medicare does not let ACOs tell patients about some features, and requires very unclear wording for the others. ACOs cannot write their own wording:

1. ACOs have waivers of the usual federal rules prohibiting payments for referrals and requiring free and open competition among medical providers. Patients are not told about the waivers at all.
2. ACOs may not list individual doctors participating in the ACO, if they belong as a group; only the group name can be listed, which patients may not recognize. It is thus hard to do a web search to see if your doctor belongs to an ACO. Patients need to ask the office whenever making an appointment, which seems impractical.
3. ACOs may not tell patients about contract terms between doctors and ACOs, "public disclosure shall not include the financial or economic terms of the arrangement.". Contracts also silence doctors if the ACO disapproves treatment, "contract language that physicians are precluded from discussing disagreements about compensation 'and other matters' with patients. The treating physician is told in contractual language that where 'disagreement cannot be resolved ... under no circumstances shall such disagreement be expressed to the Enrollee.' "
4. ACOs have a 30% chance of getting a small bonus if they cut spending on patient care. Medicare requires patients be told the focus is quality and coordination, "The ACO may share in any savings that result from providing you with high quality and more coordinated care."
5. Medicare and ACOs talk about quality care, without saying they ignore deaths, cures, or good or bad outcomes from most treatment (more in C.2, below).
   
6. Medicare reveals all of a patient's Medicare claims and diagnoses to each ACO the patient goes to. The patient can stop some but not all disclosures, as described in the following paragraphs:

Medicare has prepared a sign which is supposed to be posted at "a limited number of locations in each ACO" (Federal Register 11/2/11 p.67946) (42cfr425.312(a)). The sign virtually denies that Medicare discloses private information. It says:

• "You may not have to fill out as many medical forms that ask for the same information.
• Each of your doctors will not only know about the health issues they’ve treated, they will have a more complete picture of your health through talking with your other doctors."

Medicare has also prepared a notice which is supposed to be available in doctors' offices upon request, and the ACO may mail it to patients if the ACO chooses to. If not mailed, the only hint of its existence is on p.119 of Medicare and You Handbook, which pretends it has the same limited information as the sign, so people who can read the sign would have no reason to ask: "A poster with information about your doctor’s participation in an ACO will be displayed. At your request, the doctor will also give you this information in writing." This notice describes the loss of privacy. It is the only place which says patients cannot stop all disclosures, and that a patient's private information can go to several ACOs.. Patients have to ask for and hold onto this paper, since it was not on the web (until I got it by FOIA):

• "information will include things like dates and times you visited a doctor or hospital, your medical conditions, and a list of past and current prescriptions... 
• your information may also be shared with other ACOs in which any of your doctors or other healthcare providers participate.
• If you don’t want your information shared with these other [sic] ACOs, follow the instructions below...
• Even if you don’t want Medicare to share your personal information with us or with other ACOs for coordinating and improving the quality of your care, ... Medicare may share some of your personal health information with ACOs when measuring the quality of care given by healthcare providers at ACOs."

Medicare's FAQs, which are on many ACO websites, say the ACO will get metadata about your diagnoses, prescriptions and appointments:

• "Medicare will share information about your medical information [sic] with your doctor’s ACO, including medical conditions, prescriptions, and visits to the doctor...

• you may choose to have your name and other personal information removed from the information that Medicare shares with your doctor... [if not], your medical information will be shared automatically."

Medicare's website for patients does not say you can opt out (site for doctors does). It says:

• "doctors and hospitals will share information and coordinate your care...
• your doctors will get your medical information from Medicare to help them to know your medical history, including your medical conditions, prescriptions, and visits to the doctor

B. NOTICES AND SIGNS AT THE POINT OF CARE

A patient arriving for an appointment may or may not suddenly see a sign that the doctor is in an ACO, with minimal explanation. Medicare's theory is that the patient can "seek care from another provider". The patient is supposed to decide suddenly whether to see the doctor, based on minimal information, often sick and in pain, and maybe facing a cancellation fee.

• The ACO must "Notify beneficiaries at the point of care" and "Post signs in their facilities to notify beneficiaries" "that their ACO providers/suppliers are participating in the Shared Savings Program." (42cfr425.312(a)).

• "there will be a limited number of locations in each ACO in which the signs will need to be posted..."  (Federal Register 11/2/11 p.67946)
• The ACO must "Make available standardized written notices regarding participation in an ACO and, if applicable, data opt-out. Such written notices must be provided by the ACO participants in settings in which beneficiaries receive primary care services." (42cfr425.312(a)(3)).

On June 8, 2016 Medicare gave me these standardized written notices and signs, which must be displayed to patients when they get care. I had requested these copies under the Freedom of Information Act in July 2013. They include:

1. A sign to post (8.5 x 11 inches, 12-point type; such signs on the wall are very hard to read with bifocals)
2. A notice available for patients
3. A form for any patient to tell Medicare NOT to release certain information about the patient to the ACO
4. A form for any patient to change his/her option about releasing information
5. Instructions to ACOs about the notice, forms and signs
   
6. A small card which patients may show doctors, to ask them to share information directly with an ACO doctor
7. Instructions to patients about the information card
8. Instructions to ACOs about the information card
   

​Based on Medicare's rules, patients may have no effective notice. ACOs are permitted to mail notices to patients in advance. Otherwise patients will only learn about the ACO "when you visit the office. A poster with information about your doctor’s participation in an ACO will be displayed. At your request, the doctor will also give you this information in writing" (p.119 of Medicare and You Handbook, 2017, emphasis added). The poster/sign does not say that written information is available. The sign just says you can talk to your doctor or Medicare about it. Medicare in 2014 proposed making the sign more complex, with information on opting out of data disclosures (p.72789, 12/8/14), but the final rule (6/9/15) did not state whether they would change the sign, and disclosures are still not mentioned in the sign released in 2016.

Medicare's Written Information for Patients Makes These Points:

1. "let your doctor know how you feel about sharing your medical information"
   
2. "Your doctor or primary care provider is participating in [ACO Name]"
3. "An ACO is a group of doctors, hospitals, and health care providers working together" [sign says they "voluntarily work together"]
4. [goal is] "high quality, more coordinated service and care."
5. "doctors and primary care providers to communicate more closely with your other health care providers"
6. "ACOs may share in the savings it achieves for the Medicare program"
7. "spending health care dollars more wisely"
8. "You Can Still Choose Any Doctor or Hospital"
9. "Your doctor may recommend that you see particular doctors or providers"
10. "Medicare plans to start sharing information with us about your care... dates and times you visited a doctor or hospital, your medical conditions, and a list of past and current prescriptions.  "
11. "shared only with people involved in giving you care."
12. "your information may also be shared with other ACOs in which any of your doctors or other healthcare providers participate"
13. "you can ask Medicare not to share information with us or with any other ACOs for care coordination and quality improvement purposes by doing one of the following"
14. "we need to get your decision by" [date, to prevent data sharing]
15. "you may choose to stop this information-sharing at any time in the future"
16. "Medicare will still use your information for some purposes, including certain financial calculations and determining the quality of care"
17. "Medicare may share some of your personal health information with ACOs when measuring the quality of care given by healthcare providers at ACOs."
18. "If you have questions or concerns, you can call [the ACO], make an appointment to see your doctor or primary care provider, or bring it up next time you’re in your doctor’s office."
19. "You also can call 1-800-MEDICARE and tell the representative you’re calling about ACOs, or visit www.medicare.gov/acos.html."

The main topics in these 19 points from Medicare are:

Revealing confidential medical information is the focus of items 1, 5, and 10-17.

The ACO's organizational structure, which may direct referrals to particular doctors, is the topic in items 3 and 9. However the material does not mention that doctors in ACOs can get kickbacks from  referrals and can refer where the ACO doctor has a financial interest. Medicare approved waivers of referral and kickback rules for ACOs. So Medicare patients in ACOs are no longer protected by normal rules against kickbacks and "self-referrals," where the doctor has a financial interest. Furthermore, the Justice Department has issued policies protecting ACOs from anti-trust enforcement, similarly left unmentioned in the written material.

Medicare mentions quality of care in items 4 and 7. Medicare has a narrow and changing concept of the quality measures it looks for. The patient is not given any link or place to see what Medicare means by quality.

The ACO's incentive to cut costs is mentioned in items 6 and 7, without mentioning:

• ACO's "share" in savings can be up to 50% in most ACOs
• A few ACOs can lose money when they give expensive care to patients, which is a further incentive to economize

Readers will decide for themselves whether Medicare's wording covers what patients need to know. On the other hand, ACOs cannot decide for themselves. Medicare requires ACOs to use Medicare wording when giving information about the ACO (42cfr425.310(c)(1)), so they keep tight rein on the public spin about ACOs. However non-ACO members are not constrained in what they publicize.

C. REQUIRED WEB PAGE

Medicare requires ACO websites to have a page or pages showing staff, quality measures and "Shared Savings/Losses" (Public Reporting Format), though the web page does not have to be linked from anywhere, and sometimes can only be found if you know to search for it. Some also have an older page about "How Shared Savings Are Distributed." The examples below are from the biggest ACO, but Medicare requires every ACO to have the same wording.

1. ACOs usually include group practices, and the required web page must list them by corporate name, like "Access Neurocare PC," not the individual doctors who work there.

2. Medicare and ACOs talk about quality care, but the quality standards do not measure deaths, cures, or good or bad outcomes from treatment. Patients will not realize how limited the quality measures are, since quality measures shown to patients must use Medicare's opaque wording, such as:

• CAHPS: Getting Timely Care, Appointments, and Information - 77.71 ...
• Risk Standardized, All Condition Readmission - 14.74 ...
• Angiotensin-Converting Enzyme (ACE) Inhibitor or Angiotensin Receptor Therapy - for patients with CAD and Diabetes or Left Ventricular Systolic (LVEF<40%) - 80.88
• CAHPS = Consumer Assessment of Healthcare Providers and Systems, PQI = Prevention Quality Indicator, LVSD = left ventricular systolic dysfunction, ACE = angiotensin-converting enzyme, ARB = angiotensin receptor blocker, CAD = coronary artery disease.

They do not say what the numbers mean, whether bigger numbers mean better or worse care (they vary), nor what the range is in different areas. . They also show other numbers labeled as "Mean performance rate (SSP-ACOs)" without saying SSP means a comparison to all Medicare ACOs (Shared Savings Program). ACOs are not allowed to clarify these labels.

3. On this same obscure web page Medicare requires ACOs to tell patients the how many millions of dollars are "Shared Savings/Losses" without definition, and without context on how this compares to total spending. For example:

• "Agreement period beginning 2012, Performance Year 2015: $33,537,591"

Medicare does not let ACOs tell patients that the ACO doctors can get paid more by using the cheapest treatment, rather than the one most likely to work quickly, and by referring patients to specialists who avoid expensive treatments.