FORTUNE — Companies often tend to keep their biggest efforts internal, and they frequently start from scratch, with the idea that they ought to keep their plans close to the vest until the time comes for a splashy announcement. but more businesses should consider using the help and support of passionate outsiders.

Grassroots efforts can help a company find and connect with people who are already deeply involved in the topic and are often difficult to identify and reach by other means. for example, 23andMe, inc., a company working in the burgeoning field of personal genetics with financial backing from Google (GOOG), has built on the momentum established self-tracking healthcare movement to support its own business goals.

In 2009, the Michael J. Fox Foundation for Parkinson’s Research, the Parkinson’s Institute and Clinical Center, and 23andMe joined forces to discover who was most likely to get Parkinson’s disease. their goal was to get results faster by inviting the general public to participate in the study and to conduct much of the research online. they also wanted to help those who learned, through the study, that they had a higher chance of getting the disease to make smarter healthcare choices

To launch the 23andMe Parkinson’s initiative, the organizers publically invited anyone with Parkinson’s disease to participate. The first 10,000 to sign up online and agree to provide health and lifestyle information over the course of the study received their genomic “map” test for $25, instead of the standard $400 charge. in effect, the sponsoring groups were crowd-sourcing study subjects to get a larger sampling more quickly, using self-tracking methods for faster research results. these results could be used in conjunction with studies based on subjects making in-person visits with researchers.

One exciting outcome of the study was that participants formed tight-knit groups in the online community based on their common experience with Parkinson’s disease. for example, they were encouraged to take preventative actions based on their test results, and report their self-tracked findings online. The participants compared notes with each other while taking these preventative actions and asked experts questions in online discussion forums. The results of their accelerated learning were also tracked and made available to other participants.

The Parkinson’s research project was inspired by the energy and momentum of a broader grassroots initiative that grew out of a San Francisco Bay Area Meetup group called Quantified self. this loosely organized initiative hosts gatherings where members share their experiences related to topics as diverse as disease, mood, and cognition, among others. To record their findings, they use digital gadgets they design or computers, mobile phones, monitoring devices, or just pen and paper. By offering discounted genomic mapping and the opportunity to share results with others, the Parkinson’s initiative tapped into the enthusiasm and interests of this existing movement to help spread the word.

Alexandra Carmichael and her husband Daniel Reda, a former molecular biologist, joined Quantified self in San Francisco to learn how to track Carmichael’s long-term chronic pain and discover ways to improve her condition. soon after, they launched CureTogether, an online group where those with chronic pain could document and share the results of their self-tracking.

The community quickly expanded as people asked that their conditions be added to the ongoing group studies. Now, thousands of members share their own experiences of hundreds of health conditions. CureTogether is now collaborating on research with several universities. will Dampier at Drexel University’s Center for Integrated Bioinfomatics is using anonymized CureTogether data to build a treatment prediction system. When someone enters their symptoms into the system, it will predict (currently with about 80% accuracy) which treatments are likely to work best for them, based on what has worked well for other people with the same symptoms.

At the University of California Davis, April Armstrong and her team are comparing CureTogether’s skin disease data against published research to determine how representative CureTogether’s data is of the general population. this could help validate CureTogether as an accurate, trusted instrument for future research.

Quantified self now has groups around the world that are linked to each other through a shared website. It now includes a blog moderated by Carmichael and Wired magazine writers Kevin Kelly and Gary Wolf.

Along the way, members have created primers, videos, and guides for each other. this community, or ecosystem, brings together large numbers of diverse participants across many locations. It hosts meetings and conferences. Tim Ferriss, an active member of the original group, tapped members for feedback as he was conducting experiments for his book, The 4-Hour Body. Now, CureTogether and a firm that personalizes health information for individuals called HealthTap sponsor the Quantified self website.

The Quantified self grass-roots initiative provides a powerful example of a pack ecosystem. Pack ecosystems represent broad initiatives that are largely spontaneous, driven by a common passion among a group of participants without any clearly defined “center” to organize the efforts. some of the best known examples of pack ecosystems include extreme sports enthusiasts like big wave surfers, or “pro-am” (professional-amateur) initiatives that bring together people who have a passion for science, whether the participants are professionally trained or simply have an interest in the field.

These largely self-organized communities come together, driven by a desire to learn faster and improve. Participants connect with each other in person and online to share their experiences and challenges.

Because they lack clearly defined leadership and are so highly distributed, these communities can escape the radar screen of companies. nevertheless, they can provide powerful ways to connect with, and mobilize, deeply passionate participants who are highly motivated to support initiatives that align with their interests.

Companies ought to take advantage of existing pack ecosystems like the way 23andMe Parkinson’s initiative involved those in the Quantified self movement. Members tend to become highly connected, even well beyond the group and the larger movement. they can help spread the word about a company’s related projects and contribute their own expertise and passion.

STOCKTON – The paintings hanging throughout Cindy DeLuz’s home are as bright, colorful and whimsical as DeLuz, herself, especially when she’s talking about the joy she derives from her art.

DeLuz creates her mixed-media paintings and collage work in her Stockton home office, a tidy work space with neat rows of colored paints, a computer and an autographed photo of Michael J. Fox.

That’s her hero, she said. “I just love his positive attitude.”

Art by Cindy DeLuz can be found on her website, cindydeluz.com. For more information about the Parkinson’s Disease Foundation, visit pdf.org.

That’s one thing DeLuz, 50, has in common with the Hollywood actor. They also both have Parkinson’s disease.

For DeLuz, it was her diagnosis that led her to painting for the first time in her life at age 47.

“Oh my gosh, it’s been my recipe for lemonade,” she said, referring to the diagnosis as the lemons. “The art is a big piece of trying to find purpose and meaning behind the disease. A day doesn’t go by when I don’t paint.”

And for the third year in a row, one of her paintings will appear in the Parkinson’s Disease Foundation calendar, which is distributed to more than 20,000 people throughout the country. The calendar represents works from the more than 270 artists taking part in the foundation’s “Creativity and Parkinson’s Project,” which explores and encourages the therapeutic value of creative expressions by those with the disease.

The foundation has commissioned her to create other works of art, too.

Parkinson’s disease is a progressive neurological disorder that affects 1 million Americans, according to the foundation, and it has no cure.

Before DeLuz was diagnosed, she noticed slower movement in her right hand. She thought it might be carpal-tunnel syndrome. then she learned it was Parkinson’s.

“At first, you’re in shock. You’re scared to death.” She felt isolated and alone, but that changed when she started poking around on the Internet. Her searches led her to the foundation and to stories about other people with the disease.

The disease has changed her life, but not all of it has been bad, she said. “There’s a richness that comes if you stop running from it, and you embrace it.”

She has taught art in support groups and has gotten over a phobia of public speaking to talk to large groups of people about the disease. and she has made some money selling her art, but she admits she ends up giving a lot away. “For me, it’s about sending a message of inspiration.”

Words and phrases to that effect pepper some of her paintings.

She also paints something she calls “parkie art.” when the symptoms hit hardest, she’ll still paint, making pictures that are a little fuzzier than others.

Walking long distances could be tough because of the disease, but DeLuz has a bicycle she customized with paintings of red flowers and words, like “cure,” “hope” and “laugh.” She’s named the bike “Petal.”

With the bike, she can jet around the neighborhood with husband Terry and their dogs.

One, a Lhasa apso puppy, is named Mikey.

When he misbehaves DeLuz calls him by his full name: Michael J. Fox.

Contact reporter Zachary K. Johnson at (209) 546-8258 or zjohnson@recordnet.com. Visit his blog at recordnet.com/johnsonblog.

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Last updated at 2:02 PM on 3rd January 2011

A major study into the progression of Parkinson’s disease, which will include British patients, is being launched by actor Michael J Fox.

The research is the first of its kind and will involve 400 people from five sites in Europe and 14 hospitals in the US.

Patients in the earliest stages of Parkinson’s – before they have started any treatment – will be enrolled in the study to find key biomarkers for the disease.

Michael J. Fox with his wife Tracy Pollan. Fox, who was diagnosed with young-onset Parkinson’s aged 30, said the research was important because ‘better treatments aren’t going to fall from the sky’

Fox, who was diagnosed with young-onset Parkinson’s aged 30, said the research was important because “better treatments aren’t going to fall from the sky” and “real challenges stand in the way of the results we need”.

Currently, there is no definitive way of measuring how Parkinson’s progresses.

Fox and with former boxer Muhammad Ali who was diagnosed with the condition in 1984.

This means it is difficult for doctors to work out whether a drug is slowing down or halting the disease’s advances.

Reliable and robust biomarkers to monitor the progression of Parkinson’s would improve patient care, lead to new drugs and enhance understanding of the condition.

Some 120,000 Britons have Parkinson’s, which is caused by a loss of brain cells that produce a chemical messenger called dopamine.

Symptoms include a tremor or fine shake while the person is at rest, rigidity of muscles, slowness of movement and an unsteady balance.

In the new study, samples taken from patients will help identify what is happening in the body, and will include data on motor skills, samples of blood, urine and spinal fluid, and brain scans.

This data will be then used either alone or in combination to track progression of the disease.

The research starts in early 2011 and is being co-ordinated and part-funded by the Micheal J Fox Foundation for Parkinson’s Research.

The Foundation has spent almost ?30 million so far on studies looking for Parkinson’s biomarkers.

Debi Brooks, co-founder of the Michael J Fox Foundation, said patients will be followed for between three and five years, and compared with healthy volunteers.

“The great thing is we don’t have to wait until the end of the five years to start using the data,” she said, adding it would be made available to researchers through a publicly-accessible website, with patient details anonymised.

A scene from back to the Future 2 where Fox co-starred as Marty McFly with Christopher Lloyd. the success of the film trilogy helped Fox become a household name

So far, several pharmaceutical giants, including Roche, Pfizer, Merck, GE Healthcare and Genentech, have put millions of dollars into the research.

The Foundation wishes to recruit another three to five partners and hopes, in total, to receive 20 million US dollars (?12,896,100) from pharmaceutical companies as well as contributing 20 million itself.

As well as the US sites, there will be research centres at Imperial College London, one in Italy, two in Germany and one in Austria.

Ms Brooks said: “We are really excited to see this field-wide commitment to really going after these markers of disease progression.

“It’s a key tool for our ability to develop and test new treatments for Parkinson’s.

“Without it, there’s a risk that developing and testing treatments will remain too challenging.

“The patients really are the ones who hold the scientific secrets about Parkinson’s disease and it’s a remarkable contribution they are making to this study.”

Patients will not be on any medicines at the start of the study, although they may start taking them during the course of the research.

Ms Brooks said there is often a long time lag between developing potential treatments and getting regulatory approval.

Finding the key biomarkers for Parkinson’s would “compress” these time frames, she added.

David Brooks, professor of neurology at Imperial College, London, will lead the study at the UK site.

He said: “To develop life-transforming treatments for the millions of people living with Parkinson’s disease worldwide, we need consistent and reliable biomarkers – measurable indicators of disease risk, onset and progression.

“This study will leverage our group’s expertise in developing imaging-based biomarkers, and allow us to take our Parkinson’s biomarker programme to the next level through open collaboration with the Michael J Fox Foundation and top-flight investigative teams across Europe and the United States.”