I started Patient POV on March 29th and I have been meaning to take a look back at posts that got people thinking about healthcare, about reporting on health, and what ideas are worth considering for the healthcare system to move closer to providing the elements of care that matter most to patients.
Writing About Alzheimer’s and Dementia Gets Complicated
I attended a National Press Foundation fellowship program on Alzheimer’s Disease: Issues in 2011. Advocates put Alzheimer’s forward as “the coming tsunami in medicine.” Tsunamis overpower: there needs to be attention to how to write about Alzheimer’s for the public’s good. If it is one part of the post that is wearing, it is my longwinded raising of questions. If I had more time, I would have tempered that stylistically, but I hope the takeaway questions are seriously considered.
How One Man Faced a Prostate Cancer Diagnosis
I wanted to write an article about a man who chose active surveillance, which is ongoing monitoring to see whether prostate markers change, rather than “definitive treatment.” I was especially interested in this topic because of current controversies over prostate cancer screening, namely that many prostate cancers detected in asymptomatic men through PSA tests, do not become clinically significant. This raises the issue of potential overdiagnosis and overtreatment. There is no consensus of opinion over which prostate cancers can be safely left untreated, but the discussion is gaining steam, and it will be addressed at the National Institutes of Health later this year. In many countries, active surveillance is far more accepted by health authorities, doctors, and patients. It is a complicated issue: it is certainly not a good idea for many men, but it needs to be discussed more openly, and men and their significant others deserve to weigh the science and act on their preferences.
What the Macular Degeneration Drug Trial Means
First-year results from the National Eye Institutes CATT trial testing Avastin versus Lucentis for the wet form of age-related macular degeneration (AMD) proved to be of great interest to readers. The trial has one more year to go. I tried to break down issues that were not clear cut in other articles and get people thinking about the utility of a clinical trial in their lives.
On Disclosure, Transparency, and Firewalls: A Call for Uniform Standards
I have had major concerns about how to work with healthcare advocacy organizations in writing this blog. My preference is to speak with people who have their own opinions about their experiences in the healthcare system. Advocacy organizations obviously are another rich data source, but I think that if advocates viewpoints are discussed on Patient POV, we should know whether advocates represent a company, hold stock in an innovative patient-related product, receive dollars from industry, or the like. In other words, since money talks, let’s hold all to a universal standard of disclosure.
Social Media Weekend and Blogging on Patient POV
Sree Sreenivasam, a diverse group of panels, and volunteers made this happen at Columbia J-School for in New York. It was great to hear Andy Carvin (@carvin) speak about “no audience,” pitching that successful social media and blogging treats readers as experts, equals, and requires not talking down, or claims to represent readers. This is especially important in blogging here: I don’t portend to represent any patients.
Is There An Oncologist in the House?
This is a true story of a patient with lung cancer in search of an oncologist to follow him in a big northeastern city. The story puts the spotlight on a growing problem: a shortage of oncologists in the community and probable flight of oncologists to industry and more lucrative/less hassle opportunities. How will we come to grips with this in our society.
Planning Orthopedic Surgery: Ask Ahead About Aftercare
Two women, one on the east coast, the other on the west coast, who had multiple orthopedic surgeries. They had no aftercare, no clear way to discuss post-discharge questions with anyone on record. The American College of Orthopaedics did not get back to me regarding aftercare guidelines. If orthopedists think of aftercare, it seems to be limited to the immediate post-op setting and liability, but its hardly focused on the kinds of questions patients have.
It’s A Sign III – Deaf Access to Healthcare, by Billie Noakes
Guest blogger Billie Noakes writes about taking her deaf friend to the hospital, where over a five-day-stay, she sees an interpreter once. She is discharged with shingles pain, “which none of the expensive tests that she had” could point to. The story raises the issue that the deaf patient, not the hospital, should decide, when an interpreter is needed. In her friend’s case, medical errors were made because nobody understood what was going on. She simply had no clear way to communicate. Laws should really be changed to give the deaf more authority in requesting and obtaining an interpreter.
On Mother’s Day, Invest in Maternal Health
Mother’s Day is often a Hallmark moment, but this year, women are well aware of setbacks in women’s and maternal health, both in the United States and around the world. Maternal death statistics are not good for women living in poverty, for minority women, and in developing countries. This post is a call for action to ratchet up infrastructure to improve health outcomes for mothers and women.
Since I just finished 32 straight days of blogging last week, I thought this was a good time to take a look back. I am very interested in your ideas.
Please feel free to run an idea by me. I am especially interested in stories that NEED to be told, that can help to move the healthcare system forward, spurring happier patients with better outcomes.
You can suggest a story to me via patientpov “at” gmail “dot” com or follow me on twitter at lauranewmanny. To read some of my recent thoughts on the matter, see my post on May 29th.