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