Best health builds on trust – trust in people, institutions, information, and solutions. I trust my primary care doc. I trust my chiropractor. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. Trust doesn’t mean blind following. Rather trust leads to more control or feeling more in control. I need trust when I’m in a crisis and can’t think clearly. I listen to my immediate family and my two lead docs (in that order). I’m likely to do what they recommend. Trust is for when I need to decide but can’t or don’t want to. Trust is for times of uncertainty.
Michael Mittelman received three kidneys via transplant, his current kidney from a living donor, his mother. He identifies as an advocate for organ donation, specifically, living organ donors. He also works across disease areas to help companies understand and involve patients. He cares deeply about access and equity in healthcare. For this episode, I’m going to test calling our work as advocates, activists, and partners, an Independent Community Benefit Practice.
Patient expert, co-investigator, patient partner, subject matter expert, patient advocate, patient/caregiver activist. Many labels. Whatever you call us, invite those of us with different and unique experience, skills, and circumstances to sit at decision-making tables. Then treat us as equals and respect us. Then do something with what we offer.
Wow, four strokes by age 39. Quite a record for a sportswoman. A story about trust. First, no benefit of the doubt by the first diagnosing person thinking that Lisa was a drugged-out college student. Then Lisa’s trust in herself as a patient expert. Experience and engagement reinforce each other and builds confidence. No mystery that I appreciate I’m “good at naps.” So far, I don’t know how else to introduce young people to choices about health, wellness, or illness other than including them when someone in their lives is actively making such choices. Lead by example. Also, no mystery that I appreciate Lisa’s emphasis on telling her story. I’m delighted to be a channel.
Teresa Wright-Johnson is a giant of advocacy. We stand on her shoulders; she stands on ours. “You matter” coming from Teresa is powerful and uplifting. Teresa is a Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. A retired Parole Officer, Teresa uses her life experiences to inspire and inform others. She’s careful, conscious, and confident. She sets an example and speaks for the unspoken.
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. There may be as many as 7,000 rare diseases. The total number of Americans living with a rare disease is estimated at between 25-30 million. That’s around 8% of the population.
Patient participation in rare disease research, both wet and dry (in a lab with benches and with computers) is, frankly, rare. Of course, patients are subjects of research, but that’s not the kind of participation I’m talking about. I’m referring to patient involvement in 1) setting priorities, 2) study leadership and design, 3) improved access to clinical trials, 4) preparation and oversight of the information provided to participants, 5) post-study evaluation of the patient experience, and 6) the dissemination and application of results. Read More
CMS (Center for Medicare and Medicaid)’s work on Value-Based Measures matters for patients and caregivers because we seek affordable, accessible, equitable, and effective medical care. Or in English: Transparent cost within my means, in a location I can reach, in a fair and unbiased manner, for care that is likely to move me and mine toward best health. We, patient/caregiver experts, need a seat at the tables of governance, design, operations, and learning in the medical industrial complex to advocate for that kind of care.
I sat in one such seat (ten of twenty members represented the patient perspective!) on a CMS TEP (Technical Expert Panel). Here’s a blog post I wrote about it Oct 2017 and here’s the associated final CMS report. As I wrote in that post, Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians, and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.
The Panel completed its work in July and CMS just published the final report from the Panel. We did good work, our recommendations were heard!
Important to us, People at the Center of Care, are the following recommendations:
- CMS should support measure developers, for example, by promoting the development of a toolkit to assist developers with patient and caregiver engagement. Companies and researchers that develop measures have just begun to learn how to engage patients and caregivers in the work of creating and testing quality measures. They need a roadmap (toolkit). The toolkit should include project planning that includes patient advisors, orientation for patient advisors, guides that researchers can use to recruit patient advisors, communication tools that patient advisors can understand and find.
- Patients and caregivers need to be engaged in all aspects of measure development from priority setting to reevaluation. Just like in any aspect of health care, patient and caregiver experts need a seat at the table of governance, design, testing, sharing and learning.
- Priorities for measures should be based on domains or conditions, not clinical settings or programs. Often measures are hospital-based or office-based. Yet, as patients and caregivers know, care occurs across settings and involves a team of professionals. The measures should reflect that span of care. For example, rather than developing measures intended for hospitals or eligible providers, CMS would focus instead on a clinical domain such as osteoarthritis. In targeting osteoarthritis holistically, CMS can develop measures that track patients across the continuum of care they receive for that condition—developing measures that assess performance among the primary care providers, radiologists, pathologists, rheumatologists, orthopedic surgeons, and other clinicians that might be involved in the treatment of that condition.
The good news is that CMS has already published Requests for Proposals (RFP) about including patient advisors in the measure development process. The bad news is that these RFPs do not expect patient experts to be paid for their work by measure developers. Currently, CMS expects that participants in Technical Expert Panels work pro bono or be subsidized by their employers. Measure development companies, academia, and national advocacy organizations willingly have their employees volunteer with CMS since they benefit from the networking connection, early intelligence, and addition to their resumes or websites. They are still paid their salary for the work. On the other hand, patient experts, included in measure development are usually not so employed and are not compensated for their time. This is not reasonable or equitable. Expertise has value and should be compensated. I am not paid for my work with CMS. I don’t care about padding my resume. I don’t need a better network – part of my value is my network. My time and skill are valuable. Oh well, one step at a time. PCORI gets it. We have more work to do with CMS.