Here’s my “best of 2011” Patient POV, based on discussion, feedback, and commentary from readers and bloggers.
1. Writing About Alzheimer’s and Dementia Gets Complicated.
Be careful what you wish for: do we want more people screened for Alzheimer’s disease, put on questionable drugs, is the amyloid hypothesis our best bet? Think carefully before you push for counting folks and raising awareness.
2. Inattention to Drug Safety in the Elderly Leaves Generations at Risk.
You would be shortsighted if you read this as just an anecdotal story of my mother’s unlucky break with high-dose simvastatin. More importantly, we are drugging the elderly with medicines that were never tested on them, at doses that are poorly tolerated. Should FDA do more at the front end? Should comparative effectiveness research give us better information on drug safety?
3. On Disclosure, Transparency, and Standards: A Call for Uniform Standards in Patient Advocacy.
Is undisclosed industry sponsorship polluting what we hear about the patient’s point of view? Possibly. Let’s get a handle on who is speaking up for the patient, whether industry is driving the discussion, and letting readers decide from there. Are other agendas pushing the patient point of view?
4. LGBT Healthcare: Out of the Closet in New York
LGBT healthcare made some headway this year, but it is not all rosy. The Institute of Medicine released it first major report on LGBT healthcare, raising the need for better access to care, acceptance, and research. In New York, same sex marriage finally passed, and NYC Health and Hospitals Corporation, the country’s largest public health system, adopted a landmark program aimed at educating staff on appropriate treatment of LGBT patients.
5. How One Man Faced a Prostate Cancer Diagnosis.
One of my earliest posts on how a man sought a physician in the northeast to follow him with active surveillance for prostate cancer, documented the difficulty finding doctors who are comfortable with active surveillance. This post pre-dated the US Preventive Services Task Force on PSA screening and the National Institutes of Health Consensus Development Panel Draft Report toward the end of the year. It’s an interesting case study in bias to treat for many American doctors.
6. Planning Orthopedic Surgery: Ask Ahead About Aftercare
Two patients from different parts of the country talk about the lack of aftercare that meets patient needs following orthopedic surgery. Unfortunately, once orthopods cover themselves during the immediate post-op period, they are difficult to find if you have issues with pain, activity limitations, and more.
7. What the Macular Degeneration Drug Trial Means
The Comparison of Age-related macular degeneration drug Treatment Trial (CATT), an NIH trial, reported the first outcomes, finding that the cheaper alternative (Avastin) was just as good as the costly one, Lucentis. 2011 was an encouraging year for people with macular degeneration. There is much more to follow going forward: I hope to take a look at aggressive marketing of high-cost drugs, particularly when there is no proven added benefit.
8. On Don Berwick and the Future of Healthcare Reform
Just before the holidays, Don Berwick, head of the Centers for Medicare and Medicaid, resigned, after the GOP rallied to get him out of town. This is a look at what he brought to healthcare for patients and the patients’ point of view. Good luck, Don. We’ll miss you.
9. On Mother’s Day, Invest in Maternal Health
This has been a terrible year, with threats to Roe v. Wade, HHS Sebelius reversal of plan B, and more gutting of women’s health. This post was written before many more adverse actions reversed headway in the United States for women’s health.
10. What’s the Patient Got to Do With It?
An important post to leave you with before 2012, this raises the promise of bringing patients in at the front end to help us get to a true patient-centered healthcare system. Will we get there in 2012? Will health reform survive? With initiatives like the Patient Centered Outcomes Research Institute really elicit patient points of view that matter?
That’s it for 2011 from me. I’d love to hear more from you on what you’d like to see here in 2012 and I hope to bring you more stories that drive healthcare change.
Best wishes to all of you for a happy and healthy 2012!