What it means to be a "patient stakeholder"

Greetings from Baltimore, Maryland! I just finished a full day of reviewing grants as a patient stakeholder for the Patient Centered Outcomes Research Institute--aka PCORI. PCORI funds biomedical research, much like the National Institutes of Health, but as its name implies, the research it funds is uniquely "patient centered." What does that mean? Proposals are critiqued not just on their scientific merit but also on their involvement of patients in the research process and their likelihood of solving problems patients identify as most important. Each grant submitted to PCORI is reviewed by both scientists and at least one patient, which is why I had the opportunity to participate in a scientific review process that is typically limited to MDs and PhDs.

The whole process has been fascinating to me. I do have quite extensive experience working with scientists and reading grant proposals--when I'm not blogging, I manage the Research Funding & Development Services program at Oregon Health & Science University. That said, I'm not a scientist. I may help scientists find grants to apply for and advise on writing, but I've never had the opportunity to review a grant for a public or private entity before. In summary, the experience was incredibly rewarding and informative. I encourage anyone who is interested to apply to be a patient or stakeholder reviewer. It's a pretty hefty time commitment, but I know a few fellow health advocates who I think would make tremendous contributions as a reviewer. Feel free to email me if you're considering applying--I'd be happy to answer any questions you have.

Tanning salons in 2050

National Health Blog Post Month Day 21: Create a new technology related to health

Last week I attended a fascinating talk by TED speaker Juan Enriquez. He's a futurist--the opposite of a historian--who specializes in the future of biomedicine. One of the key points he made during his talk was that within the next year or so, genome sequencing is going to explode. This leaves us to wonder: What on earth are we going to do with all this genetic information?

To give you a little background in case you're not a science geek like me, researchers now how the power to look at all of a person's DNA collectively, which in some cases (like breast cancer for instance) can indicate whether an individual may be more susceptible to developing a certain disease. Since there seems to be a significant genetic component to melanoma (like breast cancer, it tends to run in families), perhaps genetic information could be used regulate indoor tanning usage.

Many scientists believe that in the not-too-distant future, we'll be able to walk into the doctor's office, hand them a jump drive containing our sequenced genome, and they'll be able to prescribe treatments based on our unique genetic makeup. Maybe the some data can be used for disease prevention, too.

Today's prompt asks me to create a new technology related to health. Well, here it goes: If you've been to a tanning salon at some point in the last five years or so, you may have noticed that many of them check customers in using a fingerprint scanner (my gym does this, too). What if, before you used a tanning bed, you had to scan your finger and if you're predisposed to cancer, the bed would automatically either limit or restrict you from using it? Similarly, the bed would know from a database what you natural, skin, and hair colors are, so it would time your sessions based on how long it takes for your skin to burn. The FDA currently makes recommendations on how long a person should tan based on these factors, but customers frequently exceed suggested exposure times and salons themselves don't enforce. This new technology would limit overexposure and better regulate indoor tanning.

Would this method be perfect? Of course not. Most derms will you that there's no such thing as a "healthy" tan. What this would do would limit burning (which increases melanoma risk) and restrict folks who are melanoma-prone from tanning.

Or maybe by 2050 tanning will have gone out of style. What do you think?

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This post was inspired by the Day 21 prompt for National Health Blog Post Month.
View posts by other participants.

Melanoma and particle physics

Human melanoma cells.
Image: Paul J.Smith & Rachel Errington.

Even the indoor tanning industry admits that UV light causes the most common forms of skin cancer, basal and squamous cell carcinoma. They claim, however, that there is insufficient scientific evidence to prove that UV radiation causes melanoma, a much more rare but lethal form of skin cancer. In a way, they're right. Forgive my far-fetched analogy here, but pinning down the exact molecular mechanism that causes melanoma has been kind of like the physicists at MIT hunting down the Higg's boson. We can see all this evidence suggesting that it exists, but we don't have the technological capacity to prove it. Now that we found the Higg's boson, surely it isn't too much to ask that we determine once and for all that yes, UV radiation causes melanoma? After all, in epidemiological studies, severe sunburns and tanning bed use significantly increase a person's risk for developing the disease. We just need that final bit of information that explains why.

A group of scientists from M.D. Anderson Cancer Center, Dana-Farber Cancer Institute, and the Broad Institute are getting closer. A new paper published this week in Cell identifies six new "melanoma genes," three of which are described by one of the paper's author's as, "The first 'smoking gun' genomic evidence directly linking damage from UV light to melanoma."

This line of research may also guide scientists toward more effective treatments for advanced-stage melanoma. I guess it's not quite as monumental as the discovery of the "God particle," but I'll take what I can get.

Spray tans might be bad for you now, too

Woman getting a spray tan.

My mom has been asking me about this for years--but there have literally been no new studies since the 1970s on the safety of DHA (dihydroxyacetone), the active ingredient in most sunless tanning products.

Earlier this week, ABC News did an investigative report that I absolutely frickin' loved! This may come as a surprise to some--I do occasionally use a DHA-based moisturizer before running around in a bikini--but I'm glad that someones finally digging a little deeper and trying to learn more about how DHA interacts with human cells. The report also bashes on the tanning bed industry, which as you know, is one of my favorite pastimes.

In summary: The scientists ABC quoted were heavily concerned by DHA being applied as a spray rather than a lotion. For those of you who have never gotten a Mystic, or spray, tan, they basically shut you in a box and mist you with a really stinky spray for about a minute. It doesn't take very long, but it's not uncommon to feel like you're gagging or choking on the spray. (To me, it seems like that's how you'd feel if you were an ant getting bug bombed.)

While topical application of DHA was approved by the FDA back when my mom was a teenager, according to ABC News:

"The FDA told ABC News it never could have envisioned the chemical's use in spray tan back in the 1970s, and says 'DHA should not be inhaled or ingested"' today. It tells consumers on its website, 'The use of DHA in 'tanning' booths as an all-over spray has not been approved by the FDA, since safety data to support this use has not been submitted to the agency for review and evaluation.'"

So basically, by bombarding our lungs and eyes with this chemical version of DHA, we could be putting ourselves at risk for developing cell abnormalities (a.k.a. cancer). Of course, topical application of sunless tanning products gets attacked, too. New research insights indicate that DHA may penetrate more deeply than we once thought, which means more research needs to be done to determine the costs and benefits of spray tans versus the real thing.

Now, onto my favorite part. I love it when the media does undercover investigations of tanning salons because the results are always the same: mass noncompliance with basic, federal safety recommendations. For example, even though spray tanners are supposed to cover their eyes while they're in the booth, nine out of 12 salons in the report did not have protective eye wear available. Same deal with nose and mouth guards. Apparently, many tanning salon owners are also told that DHA is so healthy, you could drink it! Yum. Mind you, these are the same folks who told me, a melanoma survivor, that UV tanning won't cause cancer.

Essentially, this report affirms several things I've been preaching over the past few months:

1. Stay the heck away from tanning salons. Even if you're not UV tanning, you're still supporting a $5 billion industry that's more concerned with making a profit than it is with your health. Plus, tanning salon operators are trained to sell. While spray tanning before a vacation two years ago, the guy at the front desk tried to sell me a "tanning cocktail" package, which means you do 10 minutes in a UV bed before you go in for your spray tan. Perhaps he just couldn't read English because it explicitly said on my client information card: History of skin cancer.

2. Love your natural skin color! This is a hard one, I know, but if think of how much safer we'd be if we shunned tanning beds of all types--UV and UV-free. Funny story: At a fundraiser earlier this spring, I was having a conversation with a woman about my experience with melanoma. I gave her the rundown about how I used to use tanning beds, but now I've become diligent about sun protection. Her reaction? "Well, at least you can still spray tan." Yes, of course I can still spray tan, but I think she missed the point.

3. Think of sunless tanners as a “nicotine patch” for tanning beds. Despite everything it says in the ABC News report—that DHA has some potential side effects—UV radiation has proven risks. If you’ve got a wedding coming up, opt for an  airbrush tanning session instead of using a UV bed twice a week for the next eight weeks. If the thought of going to the beach without a tan gives you nightmares, use a little Jergens Natural Glow. Just don’t skimp on the SPF, and don’t become one of those people whose palms become perma-orange from self-tanning cream.