It’s a good time to be a patient. I’ve been thinking about this a lot over the past few weeks as I’ve read story after story about patient empowerment, patient technology and, most inspiring to me, patient persistence.
I admit that we still have plenty of challenges and imperfections in health, especially in the United States. The elephants in the room – access, cost, reduced research funding – have all gotten bigger, and they may soon sit on the gains made on behalf of patients everywhere. But for now, I’m optimistic that patients won’t allow these challenges to stop them.
Here are four reasons why patients should be hopeful, and why physicians, health companies and regulatory agencies are adapting and growing to meet their needs:
- The FDA has a patient web site: Haven’t heard of it? It’s called simply the Patient Network. Launched last week, it offers patients and caregivers a simple, navigable tool to have their voices heard and questions answered. In the past, the only patient outreach I’d seen from FDA was allowing patients to comment at advisory committee meetings. This is a big step forward. The proof will be in how FDA engages patients, and if it can expand this content onto the social media channels patients are already using.
- Roni Zeiger wants to combine a clinical trials search engine with social networking for cancer. It’s like Google getting together with the ClinicalTrials.Gov and the best cancer patient forums out there: Haven’t heard of Romi Zeiger? I hadn’t either. Romi was the chief health strategist at Google. Now he’s working to create Smart Patients, a web site that will let cancer patients and caregivers – already extremely knowledgeable about their disease and treatment – learn from each other and let the healthcare system learn from them. The idea is exciting and has people talking. It’s made even more exciting by the fact that Zeiger’s co-founder created the Association of Cancer Online Resources (ACOR). Haven’t heard of ACOR? It’s one of the most widely used patient e-mail listservs for all kinds of cancers, allowing patients to share tips about treatments and ask questions about anything on their minds when it comes to cancer.
- Dr. Susan Desmond-Hellmann wants physicians to let patients make their job better: Dr. Desmond-Hellmann is Chancellor at the University of San Francisco California School of Medicine. She knows physicians are under tremendous pressure and that the health care system is “stressing out the very people we need the most from.” To solve it, she says patient advocates can help expand access to medicines, and that “important, transformative things happen only because patient advocates and patients had a seat at the table.” But even if patients have a seat at the table, it’s not enough. She says patients have to drive their care and create a new social contract where patients supply big data for the greater good. It’s a tall order and may take time, but this social contract could offer something game-changing in how patients are cared for. Take the time to watch her TEDMED talk. You’ll be glad you did.
- Natalie Stack’s wish is close to coming true. She has her parents and committed researchers to thank: The New York Times has the inspiring story of Natalie Stack. When she was 12, Natalie’s birthday wish was for her disease to vanish. Ten years after making the wish, she’s still alive. Natalie’s parents started a foundation to develop a new medicine for nephropathic cystinosis, a rare genetic disease that, if untreated, typically destroys the kidneys after only ten years. Even a kidney transplant may not help, and the disease is often fatal. Just last week, the FDA approved this new treatment, showing what’s possible when patients and caregivers don’t give up on progress. There will certainly be challenges over the cost of the drug, but the progress deserves to be recognized.