25. A patient organization's view
Clinicians with complex patients Planned episode, the physician. What helps patients with rare and complex disease reach a diagnosis and care, from an independent patient organization. The guest speaks about patients in general, never about an individual.
Listener title: A patient organization's view of diagnosis and care
Listener description: The leader of an independent patient organization describes what patients with rare and complex disease most often say helped them reach a diagnosis, what physicians most often miss, and how practices and patient organizations can work together. The guest speaks about patients in general, never about an individual. For clinicians who care for complex patients.
Run of show (about 40 minutes)
| Time | Segment | What happens |
|---|---|---|
| 0:00 to 2:00 | Opening | The host introduces the episode and the guest's role, and restates the ground rules: no patient information, and the guest speaks about patients in general, never about an individual. |
| 2:00 to 6:00 | Guest and disclosures | The guest describes the organization, whom it serves and how it hears from patients, and discloses its funding sources and any industry relationships. |
| 6:00 to 15:00 | What helped patients get diagnosed | The guest describes, in aggregate, what patients most often tell the organization moved them toward a diagnosis. The host asks how the organization gathers this, for example surveys, help lines or meetings, and how representative it is. |
| 15:00 to 24:00 | What physicians most often miss | The guest describes the points in the course where patients most often report being missed, and what they wish the first physician had asked or written down. The host asks which of these a primary care visit could reasonably catch. |
| 24:00 to 32:00 | Working together | The guest explains what the organization can offer a practice and what it needs from physicians. The host asks how a practice can tell patients about an organization without steering them, in keeping with the network's principle that the patient chooses. |
| 32:00 to 37:00 | Independence and funding | The guest explains how the organization keeps its positions independent. The resource roster page cites a 2017 survey in which most patient advocacy organizations reported some industry funding and a minority depended on it; the guest explains what a physician might ask about an organization's funding before suggesting it to patients. |
| 37:00 to 40:00 | Closing | One practical takeaway: ask patients which organizations they already use and what they got from them, and read an organization's funding disclosures before suggesting it. Listeners can reach the network at hello@coloradocarenetwork.com, and physicians can use the interest form at coloradocarenetwork.com/join. |
Guest prep questions (sent to the guest a week ahead)
- How does your organization hear from patients, and what do they most often say helped them reach a diagnosis? Please speak about patients in general, never about an individual.
- From what patients tell you, what do physicians most often miss, and at what point in the course?
- What would you want a physician to know about your organization before mentioning it to a patient?
- How is your organization funded, and how do you keep its positions independent? Every guest discloses industry relationships at the start of the episode.
- Where have practices and patient organizations worked well together, and where has it not worked?
Show notes
The leader of an independent patient organization and the host talk about what helps patients with rare and complex disease reach a diagnosis and care. The guest describes, in aggregate, what patients say helped and what physicians most often miss, and how practices and patient organizations can work together without steering patients. The resource roster page cites a 2017 survey of patient advocacy organizations and industry funding, and the guest explains how their organization keeps its positions independent. The guest speaks about patients in general throughout.
- Sources: Rose SL, Highland J, Karafa MT, Joffe S. Patient advocacy organizations, industry funding, and conflicts of interest. JAMA Intern Med. 2017;177(3):344-350. doi:10.1001/jamainternmed.2016.8443
- No patient information is discussed on this episode.
All planned episodes. To be the guest for this episode, email hello@coloradocarenetwork.com with the episode number.