The University of Michigan KECC is conducting an ESRD Patient Reported Outcomes Quality Initiative Project Patient Life Goals Study, and seeks dialysis patients at least 18 years old to answer a new Survey that asks about your individual life goals and your dialysis facility care team. Life goals are personal goals that you think are important to achieve, such as having the ability to go to work, go to school, travel, or spend time with family. The Study aims to improve the odds that your care team will consider your individual life goals in the treatment planning process. Find an introductory letter and the Survey at https://redcapproduction.umms.med.umich.edu/surveys/index.php?s=DT4N3P48AC. There’s an easy-to-miss check box at the bottom of this page, which you have to check before the Survey questions appear. The Survey doesn’t seem to specify an expiration date.
CMS has published an Interim Final Rule with Comment Period on the Flexibility changes in Medicare rules made on March 31, 2020. The Comment Period will expire June 1, 2020. For details and comment see Medicare and Medicaid Programs: Policy and Regulatory Revisions in Response to the COVID-19 Public Health Emergency at https://www.regulations.gov/document?D=CMS-2020-0032-0013.
AAKP is asking dialysis patients to take a survey on their experience with and concerns about COVID-19. AAKP’s introduction follows:
“AAKP works closely and constructively with Federal and state officials on health issues of concern to both the general public and those who are immunocompromised – like kidney patients. As we have in the past with flu and vaccines, we are interested in relaying your insights about the Coronavirus to relevant officials so that their actions and communications are better informed and responsive to your concerns. As a dialysis patient, has the Coronavirus impacted your thinking or behavior? What communication, if any, have you, as a dialysis patient, received with your healthcare team and/or dialysis facility? TAKE A FEW MINUTES, TELL US YOUR THOUGHTS! AAKP will share insights gleaned from you with the brave medical and scientific professionals fighting the Coronavirus! … Answers and any comments provided will not be attributed to any individual – the FLASH SURVEY is completely anonymous.”
Find the survey at https://www.surveymonkey.com/r/DialysisandCoronavirus. They do not indicate how long the survey will be available.
In December CMS proposed revisions to Organ Procurement Organization Performance Measures for Kidney Donation Rate and Transplant Rate, and to OPO monitoring and benchmarking. The revised measures aim to increase the number of Kidney Transplants by about 5,000 per year. The revisions are described in the Fact Sheet at https://www.cms.gov/newsroom/fact-sheets/organ-procurement-organization-opo-conditions-coverage-proposed-rule-revisions-outcome-measures-opos. Public Comment is due by February 21, 2020. The Proposed Rule is published in the Federal Register at https://www.federalregister.gov/documents/2019/12/23/2019-27418/medicare-and-medicaid-programs-organ-procurement-organizations-conditions-for-coverage-revisions-to.
The University of Michigan Kidney Epidemiology and Cost Center, under contract to CMS, is seeking dialysis patient and facility staff volunteers to provide feedback, via a half-hour phone call, on a draft of a short self-report questionnaire on patient life goals. They seek both patients with experience on HD, PD, or HHD, and clinical staff (nephrologists, nurses, dieticians, social workers). Those interested are asked to send a one-paragraph statement describing your interest and experience, to email@example.com by September 12, 2019.
The Coalition for Compassionate Care of California is conducting a survey to better understand the level of interest and engagement in a state-wide electronic Registry of Physician Orders for Life-Sustaining Treatment (POLST). POLST is a form that gives seriously-ill patients more control over their end-of-life care, including medical treatment, extraordinary measures (such as a ventilator or feeding tube) and CPR. Printed on bright pink paper, and signed by both a patient and physician, nurse practitioner or physician assistant, POLST can prevent unwanted or ineffective treatments, reduce patient and family suffering, and ensure that a patient’s wishes are honored. Since it’s designed to be readily available to all healthcare practitioners in any setting or circumstance, electronic availability would promote its purpose. For more information and a sample of the California form, see https://capolst.org/. Take the survey, if possible before August 9, 2019, at https://www.surveymonkey.com/r/3XC2PGX.
Home Dialysis Central has posted a thorough review of the proposed new ESRD reimbursement models discussed at https://nwrnbulletins.wordpress.com/2019/07/12/new-cms-payment-models/. Find the review at https://homedialysis.org/news-and-research/blog/318-what-the-em-advancing-american-kidney-health-initiative-em-aakhi-executive-order-may-mean-for-you.
The ETC payment model has been published in the Federal Register, and public comments are due by September 16, 2019. Find the Notice at https://www.federalregister.gov/documents/2019/07/18/2019-14902/medicare-program-specialty-care-models-to-improve-quality-of-care-and-reduce-expenditures. The Executive Order that triggered the new payment models is published at https://www.federalregister.gov/documents/2019/07/15/2019-15159/advancing-american-kidney-health.
CMS is requesting public comment on future phases of their Patients over Paperwork program, with comments due by August 12, 2019. Find the Federal Register notice at https://www.federalregister.gov/documents/2019/06/11/2019-12215/request-for-information-reducing-administrative-burden-to-put-patients-over-paperwork. The CMS Patients over Paperwork web page is at https://www.cms.gov/about-cms/story-page/patients-over-paperwork.html, and a press release on the RFI at https://www.cms.gov/newsroom/press-releases/cms-seeks-public-input-patients-over-paperwork-initiative-further-reduce-administrative-regulatory.
CMS has proposed that they improve their payments to rural hospitals, in an effort to improve rural health in the US. While this isn’t directly relevant to ESRD, it will certainly be relevant whenever a kidney patient needs services at a hospital in a rural area. Find the Proposed Rule and Request for Comment at https://www.govinfo.gov/content/pkg/FR-2018-05-07/pdf/2018-08705.pdf, and a Notice of Corrections at https://www.govinfo.gov/content/pkg/FR-2018-06-20/pdf/2018-13152.pdf. Comments are due by June 25, 2019. For background information see https://www.cms.gov/blog/putting-our-rethinking-rural-health-strategy-action and https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/AcuteInpatientPPS/FY2019-IPPS-Proposed-Rule-Home-Page-Items/FY2019-IPPS-Proposed-Rule-Regulations.html?DLPage=1&DLEntries=10&DLSort=0&DLSortDir=ascending.
CMS is preparing to improve rules for Accrediting Organizations (AOs) that on contract survey healthcare facilities for Medicare Certification. They are requesting public comment on whether it should be considered a conflict of interest for an AO to also accept consulting fees from the corporation that’s opening the new facility. Comments are due by approximately February 18, 2019 (sixty days after publication of the RFI in the Federal Register, scheduled for December 20, 2018). The RFI is summarized at https://www.cms.gov/newsroom/fact-sheets/medicare-program-cms-requests-stakeholder-feedback-accrediting-organizations-conflict-interest-and. The proposed Federal Register text can be found at https://s3.amazonaws.com/public-inspection.federalregister.gov/2018-27506.pdf.