The Patient Empowerment Revolution

Even in the midst of one of the most significant economic shifts this country has seen since the Great Depression, Sergey Brin's disclosure last week that he carries a genetic mutation increasing his risk for Parkinson's disease managed to put the genetics-driven revolution in health care back into the headlines.

Certainly it's not news that technologies to probe our genetic and biochemical make-up are becoming more sophisticated, affordable and accessible. But paired with Internet-based direct-to-consumer services, they are now starting to produce information that feels increasingly relevant to our everyday lives as individuals, health care consumers, and funders (through our tax dollars) of the U.S. government's biomedical research machine.

It's still easy -- both for the scientists producing this work, and for the rest of us observing from the sidelines -- to become paralyzed by both the amount of information that's emerging and our ability to understand its broader relevance. Researchers produce massive amounts of data, and interpretation of this data remains challenging. Often, findings that make a splash are based on small sample sizes, and their greater applicability is therefore debatable.

Yet even with these complexities, each new report of a disease-implicated gene leaves many of us with an uneasy sense of waiting for the other shoe to drop. Brin's revelation, which set off a flurry of new writing on the role of genetics in PD, probably left many people surprised. He's in his 30s, there's nothing he can do currently to lower his risk -- why would he want to know? After all, at this point, for Parkinson's disease and many other diseases, the relevance of genetics information to disease management is nil, and no new therapies have been developed that can treat or prevent the disease once a risk factor has been identified.

But when I look to the future -- say even just five years ahead -- I'm convinced that more and more of us will be following Brin's lead. As technology improves and costs decrease, it's possible to envision a situation where we each carry our genetic profile around with us as we proceed through life -- using it as a new lens to assess risks and prevention/treatment options, and considering it seriously in the choices we make.

But beyond technology advances, I'm excited because I see that a bigger movement -- patient empowerment -- is driving this revolution. Around the globe, people are waking up to a newfound ability to take ownership of their medical futures. That means not only paying attention to scientific discoveries in real time and making efforts to understand what those findings actually mean, but rethinking our individual impact in bringing these discoveries about. Our Foundation is working on a number of different fronts to harness the power of the Internet for gathering patient data in nontraditional - yet scientifically valid - ways. We want to work toward answers to questions like: How can links between our daily lives and our genetic profiles build scientific understanding of health, disease, and ultimately contribute to the development of new therapies (including participating in clinical trials)? How can individuals' feedback be delivered back to drug companies more effectively - so that they have a better understanding of how their medicines are being used, what's working and what's not?

This empowerment carries over to philanthropic choices as well. How -- if at all -- would donors change their involvement if they knew they had a personal stake in the outcomes of their charitable gifts? What sort of accountability would they expect from the recipients of their contributions? What might all of us ask of our government in terms of ensuring that our tax dollars support a medical research enterprise that can drive us toward cures?

While information can be paralyzing, it can also be transforming. As individuals take more interest in their genetic information, and technology becomes increasingly accessible, the way we conduct research will fundamentally change. It's essential for anyone who cares about medical research and health care to begin thinking about the world a few years from now -- not just the world today.

Comments

[neurologymatters]

The information about DNA testing is interesting. We need stem cell research-it should not be an option. There are the donations in states that allow umbilical cords which hold promise. Wisdom teeth and baby teeth can help. Every alternative needs to be explored. When Senator Biden mentioned stem cell research, I signed up to make calls for Obama/Biden. People are undiagnosed, misdiagnosed, and have few options. This is an epidemic.

[lclilly]

If it's something as important as human DNA that they seek - they should be paying people, not charging them. Many people with chronic illness are fully aware of the innovation and potential of this project. Coming up with $1,000 and thinking five years down the road to a person with an advanced chronic illness produces blurred vision and a blank look. Patients are already empowered by their own knowledge, but are not valued by the research community. (Exception - wealthy contributors, whom we do need very much). Nevertheless, most are unable to participate and rather than feeling empowered, they feel powerless. Perhaps someday patients will be seen as an investment in the research process; one that brings back honest returns.

[redplanet]

This post talks of cutting edge information and patient empowerment at the same time it speaks of dinosaurs like clinical trials and pharmcos. Leave it behind. These are the past...just like the bs of universal health care. Now is a window of opportunity to really be creative without the spin doctors of the very bloated pharmcos taking charge. Universal health care is more of the same toxic care and drugs of the past. 23andme.com is such a huge step forward, the personal genome combined with the really cutting edge doctors (you won't find them in your Kaiser or HMO) is where the future lies. No one needs to become "paralyzed" with information - that's more control speak. Information is liberating and the more you tell people that instead of, "you can't handle it" the more they will truly be empowered. Don't offer power in one hand and control in the other.

[biabouman41]

Yes I know genetics might be important to some, but why have we abandoned the issue of UNIVERSAL HEALTH CARE. We should not forget it in this presidential campaign. It is a critical issue. It is fundamental to how well we do as a nation in so many ways. As an example, when the Canadians introduced UNIVERSAL HEALTH CARE in the 1970's, many small business start ups emerged because their owners no longer needed their former employers to provide health coverage, etc, etc. We need to be dealing with UNIVERSAL HEALTH CARE.

[wolfgangmo]

Speaking as a clinic manager where we offer genetic testing, we do not allow patients to bill it through their insurance companies. Why? Because all insurance companies share information on a national database and the information one has, any other one can use at a future time to deny you coverage, or boost the cost, or deny a so called pre-existing condition.

Until there is universal coverage, then I strongly suggest that no one gets one of these tests unless they pay cash.

My apologies to the author, but until there is universal health care, then widespread use of genetic tests will only harm long term health. The knowledge gained from them can also be used to deny treatment if an insurance company is involved.

[lclilly]

I have to agree with dynamohum's comment. The average person with PD, living on disability, is not included in this picture. Five years from now, if the test is covered by insurance, large numbers may participate. Although this is an excellent concept, I'm afraid saving rich execs isn't high on America's priority list today. Many are already proactive, and waiting for reciprocity.

lclilly

[Dynamohum]

I don't think that the average American would consider the cost of these tests as acceptable. The testing needs to come down in price before this is going to happen on a large scale. Being proactive about one's health and healthcare is becoming necessary, but most people are caught up with how to pay for just the basic care.

[Katie Hood - Huffpost Blogger]

I couldn't agree more. Basic health care is a real and fundamental challenge for many -- and that could be the topic of a whole different blog (at minimum). At this point, this technology is expensive but as with other technologies, over time it will become cheaper. Just last night I was speaking with someone about this, and they assumed this test was $10,000... in truth it is $1000 or less. Still expensive, but bound to drop over time.

When it becomes more accessible, this (combined with the desire of more people to be more proactive about their health) will open a huge new opportunity for how we approach research and the drive for cures -- and that"s all I really wanted to say -- we should be ready! I think it will be sooner than we think.