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.
I attended the tenth annual Healthcare Literacy in Research Conference in DC last week as a PCORI Ambassador. As is my habit, when I go to conferences I think, So what? How does this help lay people navigating health and illness?
What is literacy anyway? Ability to read and write? No, that’s not enough. Maybe it’s more. Keywords may include: understand, communicate, useful, culture. Understand whom? People understanding professionals? Professionals understanding people? Who communicates? People, communities, professionals communicate with each other. Communicate what? Useful knowledge about illness, health, or life? Or all of it? In a culture of doctors, nurses, hospitals, and clinics? OR culture of people and communities?
So, at the conference, I was looking for co-produced research (researcher and patient partners) about lay people, professionals, and communities understanding each other to increase useful knowledge about less illness and best health.
Here’s a sample of the best of what I heard and learned.
- Family literacy programs: A call (again) for health literacy in partnerships with adult basic education: In search of ‘new oil’ and ‘new lanterns.’ Maricel Santos. The adult literacy world and public health need to spend more time in each other’s worlds. The goal is not to make things simple, but to make them understood. Literacy existing in the context of life helps literacy matter. Here is an article by Santos. Nice.
- One of my favorite posters, Helping Consumers Choose and Use Health Care. Stephen Rush. Readable, large font, high contrast (unlike many posters which are small font, low contrast at a literacy conference). Very practical. Introducing Just Plain Clear Glossary (justplainclear.com)
- Digital Literacy in an Urban Cancer Population: Who are we leaving out? Alison Petok, Sidney Kimmel Cancer Center, Thomas Jefferson University. My 2 cents: In spite of the literature saying that smartphone use is on the rise and that many use their phones for health, the distribution of internet access is variable across demographics and the proportion of those using a health app more than twice is low. This poster describes this variation in more detail and describes hosting workshops to increase comfort with using portals and health apps. My mom used to annoy me. I was her personal help desk. I suggested she find a 15-year old at church, pay $10/hour, for her personal help desk. She shifted from flip to smartphone and started using health apps. And stopped calling her cranky son.
- Health Literacy in Health Systems: the association between health service providers health literacy, awareness, and attitudes toward health literacy promotion, and patient communication. Diane Levin-Zamir and Shirley Mor from Israel. Health literacy in the context of the settings of medical/patient relationship (hospital and clinic cultures), not the single focus on patient health literacy.
- Health Literacy and Health Communication in the Social Networks of New Mothers. Tetine Sentell. Another presentation considering the context of health literacy. In this case, social networks. Where do mothers get health information about their pregnancy? (Mother, mother-in-law, friends, colleagues) Sad to say, their husbands are seldom part of that social network.
- Communication in the Dental Clinic: Describing the role of health literacy and nonverbal behaviors. Dafna Benadof from Chile. First, love seeing dental as a study area. Dental health is a great barometer of overall health, yet, similar to behavioral health, vision, and hearing, considered separate. Second, so much of health literacy is the written and spoken word. Gestures, facial expressions figure in as well. This study looks at the similarities and differences in nonverbals between patients and professionals.
I was disappointed that I saw few co-produced studies. The research was mostly about illness literacy of lay people in the cultures of doctors, hospitals, and clinics with notable exceptions such as those above. Slowly, we progress. A valuable conference. A good use of my time.
My recurring mind loop these days is non-traditional patient, non-traditional patient, non-traditional patient. I heard it repeatedly while attended a one-day symposium, Putting Patients at the Center of Research: Opportunities for Ethical and Regulatory Oversight at
Harvard Law School’s Petrie-Flom Center. See a great report written by Andy Oram about the symposium here. The symposium showcased a PCORI (Patient-Centered Outcomes Research Institute)-funded study about patient involvement in research in non-traditional roles (not the subject*). The study actually focused almost exclusively on Institutional Review Board (IRB) perceptions of patients in non-subject roles. Interesting focus since the role of the IRB is to protect patient rights in research studies as subjects, not other roles.
*Please note: Subject is a loaded word for some. They say participant rather than subject, a more egalitarian term. I’m sticking with using subject because I’m introducing the label of Participatory Research. I don’t want to confuse the issues.
No one’s ever accused me of being a traditional patient and I’m not defensive. Right:) You know I’m heavily involved with PCORI whose reason for being is to fund research that matters to patients and will benefit patients. It’s odd that a PCORI-sponsored study would label anything a person does who is not an academic and not a subject of a research study as non-traditional. The roles the study refers to as non-traditional are membership in the research team as an investigator, advisor, consultant, recruiter, or disseminator. It seems that the study started with a bias when they called other roles, nontraditional, rather than, say, non-subject roles. It didn’t call researchers who include patients in non-subject roles, non-traditional researchers.
My patient/caregiver activism rests on a foundation that patients and caregivers should have a seat at the table for governance, design, operations, and learning of healthcare policy, planning, delivery, improvement, and research. It makes sense that much of the research industry feels like a fish out of water with patients in their midst. Perhaps labeling (non-traditional) is a reflection of their acute discomfort with other. We call people of the Navaho nation whose ancestors lived in the continental US before the Puritans, American Indians. We call people who emigrated from China during the California Gold Rush, Chinese Americans. Yet, I’m white, first-generation American. I’m not called Dutch/German American, just American. Perhaps when many researchers think patient, they think someone wearing a hospital gown with their butt crack bare, not skilled, insightful, hardworking, curious, passionate people like themselves. Other.
As a reviewer of PCORI funding requests and co-chair of an Advisory Panel, I’m fortunate to be part of a leading edge of culture change in the human research industry: Participatory Research. I have seen research teams with patient/caregiver stakeholder Investigators and Advisors paid on equal footing as the academics. I’ve even seen respite care budgeted for carees of caregivers, so they could free themselves to participate in any role. Culture change seldom occurs by waving a magic wand. Rather it moves in fits and starts as the bulk of researchers follow Participatory Research early adopters. Early adopters see participatory research as a no-brainer. Those that follow feel like they’re putting round pegs in square holes. They question the capacity, skill, and confidentiality of lay people in research team roles. They think patients need to be protected, that they need to become more research literate. A great research team has members with statistics and methods expertise, recruitment expertise, project management expertise. Often with less experience with patient/caregiver life flow and direct care clinician workflow. They seldom require life experience training or statistical training for those without such experience. However, everyone, no matter the role, needs to have documented understanding of the rights of subjects and confidentiality of individual data.
I appreciated the presentations at the symposium of three patients (Jane Permuller, Marty Carney, and Paul McLean) in non-subject roles highlighting the benefits of patient participation in research. I also respect Harvard Law School’s Petrie-Flom Center for scratching the surface and reminding us (me) that the spread of participatory research is in its infancy and we activists have much work to do.
Everywhere I go it’s patient-centered this and patient-centered that. What does it even mean? It doesn’t take long for buzzwords to wear thin (patient engagement, silos, gig economy, NexGen). Don’t me wrong. I wholeheartedly support Patient-Centered Outcomes Research Institute (PCORI) and the Patient-Centered Clinical Decision Support-Learning Network. I subscribe to Picker’s Eight Principles of Patient-Centered Care.
I also endorse the IOM (Institute of Medicine) patient-centered definition “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”
Once something becomes part of popular jargon and media I can’t help but re-evaluate what I mean and what others mean. When I’m invited to sit at a governance, design, operations or learning table I ask, What do you mean by patient-centered? Invariably, people assume what others mean and actually have different definitions (or often, none at all). The most common definition people say is, patients are in the middle of everything. Well, they’re not. I can’t even picture the design challenges of patients in the center of everything. I am in the middle of everything for me. That’s complicated enough. I’m learning that being self-centered means taking care of myself and standing up for myself. I’m responsible for doing the work to understand and communicate my preferences, needs, and values. I’m responsible for respecting myself. I’m pretty good at that, but I could be better. I need my whole team to understand their preferences, needs, and values, respect themselves and take care of themselves. I need them to keep up with the skills and knowledge of their specialty or role. Stronger team members make for better collaborators with more respect overall. I’m going to have better health in the long run when clinicians stand up for themselves and struggle with the oppressive business of health care. I’m better off when they are less burned out and have more time for me and themselves. I’m better off if they’re self-centered and take care of their jobs – knowing and communicating choices to me. Read More
Since I stopped being an employee or a boss two years ago I’ve written annual reports for myself. I had written ones for my boss and staff for 25 years straight. I thought I’d keep it up now that I’m retired from that. Helps me be sure that my work serves my mission. With so much to do in this sick, sickness industry, it’s easy to feel disappointed and burned out. Fortunately, I’ve made a career of beating low expectations – starting with something truly disappointing and finding the small thing that can have an outsized impact by moving that something a lasting inch. I call them levers for best health. I’ve found that drinking water has the most outsized impact for best health. Anyway, the annual report helps me keep a pulse on the balance between impactful work and stoking my fires while managing my health and having fun. It’s an inspiring strange ride. Thanks for being on the ride with me. I couldn’t do it without the personal inspiration of my immediate family (Ann, Simon, Ruben, Jessica, Kate, Anica, Jacky, Leon, and Oscar) and my friends (Mary Sue, Sue, Michael, Kathy, Fatima, Regina, John, Geri, MaryAnne, and Pat). Read More
You’ve heard the Chief xxx Officer saying, I don’t need to listen to patient experts, we’re all patients. Gee, what do you say to this inexperience? You’ve also heard the empathy and born-again drive of the Chief xxx Officer who has a chronic illness, was recently hospitalized, or is the caregiver of a family member with chronic illness. Nothing can replace the experience of spending a day in a hospital bed or navigating your neighborhood for a day in a wheelchair.
I attended the Society of Participatory Medicine’s first conference a couple of months ago. Some businesses making big money from patient data describing their volunteer patient advisory panels or providing gift cards to their patient experts. We’d like to pay more, but it’s what we can afford.
I’ve been a reviewer of funding requests since 2013 for Patient-Centered Outcomes Research Institute (PCORI). PCORI pays all stakeholder reviewers (patients, clinicians, scientists, administrators) the same stipend-a reasonable amount.
In 2013 and 2014 funding applications I reviewed listed either no payment or $50 gift cards for patient stakeholders on their Research Advisory Boards. By 2016 many funding applications listed $500-$1000 stipends. In 2017 I saw an application that budgeted for the payment of respite care for caregiver experts’ carees. We’ve come a long way.
The US has a love-hate relationship with paying for value. It’s like the Golden Rule: easy to say, tough to do. Just look at the Trump-Ryan-McConnell tax bill. I digress… The healthcare industry values credentials as a proxy for knowledge- whether or not they know what the acronyms mean. Acronyms = expertise. Credentials usual mean deep expertise in a narrow subject. We willingly pay for deep and narrow with credentials. Patients can have deeper knowledge about a narrower subject than those credentialed. We don’t have a means to calculate that value nor a willingness to pay for it. Read More