Your health, your data and why context matters

It's your body and your health. It's also your data. But do you know what to do with it?

That is one of the byproducts of the recent dust-up between the U.S. Food & Drug Administration and 23andMe about whether the genetic testing company can continue to sell its $99 DNA sequencing kits directly to consumers. The kits offer insights into a patient's risks for cancer and other diseases.

Here is the crux of the FDA warning, issued November 22:

FDA is concerned about the public health consequences of inaccurate results from the PGS device; the main purpose of compliance with FDA’s regulatory requirements is to ensure that the tests work.  

Four days later 23andMe posted a letter from CEO Anne Wojcicki:

It is absolutely critical that our consumers get high quality genetic data that they can trust.   We have worked extensively with our lab partner to make sure that the results we return are accurate.

This is new territory for both 23andMe and the FDA.

This is also new territory for patients. And it goes well beyond 23andMe and genetic testing.

There are two big issues here — accuracy of the results and the context of communicating these data.

Data are everywhere. Patients are getting more comfortable tracking and analyzing their own health data — from reading their own blood pressure at machines in places like Walmart to wearing fitness trackers, like Jawbone Up, Nike FuelBand or the FitBit.

But when we deliver health data that requires context — such as your likelihood to develop some type of cancer, heart disease or neurological disease — that's where analysis and guidance from trained health care professionals becomes essential.

Self analysis works well when you're tracking calories. It has worked well for decades for diabetics who track their hemoglobin because they have been instructed in what to look for and what the different readings mean.

We are moving to a health care world that is data rich. It must also come with equal doses of caution, communication and compassion so that data are meaningful, useful and actionable.

Your idea of healthy living is … yours

Healthy living looks different to each individual.

But a healthy community is something everyone can visualize. And a goal to which every community can aspire.

It means better access to healthy foods, safe parks and playgrounds for kids, improved routes to walk and bike to school and work, and lowering the incidence of diseases — from diabetes to obesity to heart disease and beyond.

We can look at aggregate numbers of health behaviors and indicators that we want to improve — easy targets are smoking rates, obesity levels, amounts of exercise and incidences of high blood pressure — but everyone in our community will not be able to achieve every metric. 

But everyone can get healthier.

As we focus on building healthier communities, let's not forget individualism. That's why community minded health initiatives must focus on helping people achieve individual goals while aiming for a community goal. By doing so, we can help everyone find and reach their highest level of health — and improve all those aggregate measurements that give us an overall community health score.

Last month the Robert Woods Johnson Foundation Commission to Build a Healthier America issued a report, Collaboration to Build Healthier Communities, which explored how cross-sector partnerships can foster an environment that promote health. 

Cross-sector collaborations have had a positive impact on the health of many U.S. communities.

The report lauded the many and now widespread partnerships across the U.S. that are beginning to make a tangible difference in people's lives (I was proud to be a founding member of such a group, Voices for a Healthy SouthCoast).

The report offered three recommendations to keep the momentum going:

1. National leadership: Many of these collabortions are local and regional. The RWJF suggests a formal national network to tie them together.
2. Better skills and knowledge: Build an educational and training system that imparts technical and communication skills that will help these coalitions build capacity.
3. Build through measurement: Create evidence-based resources, such as a national database, to help document and promote the progress. This will help bolster existing projects and give rise and confidence to those that are emerging.

It is exciting to see such great momentum, solid ideas and positive energy in the make our communities healthier movement. 

You can download the entire RWJF report here. 

Is obesity a disease?

With the American Medical Association declaring obesity a disease, perhaps now our health care industry can truly get behind making our communities healthier.

The designation alone will not create change. 

But it does create a significant shift in thinking, one that can advance a targeted discussion that can perhaps finally bring together the many disparate and fractured systems to tackle a major issue that affects quality and cost of care.

Dr. Suzanne Koven, in her "In Practice" blog on boston.com, said it well:

"The AMA has no specific authority to designate obesity as a disease, but it's decided to use its considerable influence to effect a cultural shift. The hope is, that if obesity is thought of as a disease, insurance companies will be more supportive of obese people, researchers will pursue the problem more aggressively, public health efforts to curb obesity will be strengthened, and individual clinicians ... will be better trained to address obesity with their patients."

It's time to move from talking about healthy communities to actually creating them. This step certainly helps.