Personalized Genomics Panel at Jewish Community Foundation in Palo Alto

Waiting for full sequence?

 Photo credit: Julie Blaustein

Last night I had the chance to cover a Personal Genomics: What Consumers and Investors Want to Know panel at the Jewish Community Federation. You can watch the entire conversation here: http://www.livestream.com/sfjcf

Panelists:
Michael Goldberg, Partner, Mohr Davidow Ventures
David Magnus, PhD, Chair, Program in Regenerative Medicine Sub-Committee on Bioethics and Conflict of Interest, Stanford University
Hugh Rienhoff, MD, Founder of MyDaughtersDNA.org 
Ashley Gould, General Counsel, 23andMe
Moderator:
Robert Blum, President and Chief Executive Officer, Cytokinetics and Chair, Business Leadership Council of the Jewish Community Federation

• Michael Goldberg stated the businesses Mohr Davidow are involved with are physician mediated, if not, then genetic counselors help interpret the results. David Magnus brought up ethical issues such as data ownership, clinical utility of SNP tests. 
• Hugh Rienhof gave us an update on his quest to find a diagnosis for his daughter by sequencing genes: hers, their family and other volunteers. 
• Ashley Gould said 23andMe is not interested in the technology but rather the genetic data and data interpretation with an emphasis on research to make personalized medicine a reality. 
• David gave the strongest opinion, declaring that the data from Navigenics and 23andMe as clinically useless since it's "just a drop in the bucket." Ashley seconded David's opinion, saying for the second time in the evening that data from 23andMe is not meant to be used for clinically relevant health decisions and encouraged anyone with concerns to consult a doctor.

The panel was in agreement that full sequencing is the future, it's not a matter of how but rather of when. Michael Goldberg addressed the question of how to make money from this new world by ending with, "We want to make sure that we don't get ahead of what society is ready for." The take home from the panel is "Yes, full sequence is the next step!", answering the question at the beginning of this post, "Waiting for full sequence?" 

On a bigger level though, a small instantaneous community sprang up because of our shared interest in personal genomics. Though this event happened in Palo Alto, CA in a space that is constrained to a few hundred people in the auditorium, technology has made it possible to have almost instantaneous communications. We had real-time discussions over Twitter and in the chatroom from people thousands of miles away and internationally. Just glancing over who I talked to, the group consisted of a Health 2.0 activist, a government employee, a lawyer specializing in genetics and a human/computer interaction technologist. The panelists came to this event with their lens: Michael because he invests in the space, Hugh because of his daughter, David for the societal issues personalized genomics brings up and Ashley because of her father. The people following the live stream and on Twitter also came for their own reasons, one person because he is adopted and has no family history to rely on at the doctor's office, another because of her interest in patient advocacy. I'm sure everyone in the audience had their own reasons for attending, as many as the number of people who were listening. This event brought people with a common interest together and even if none of us ever meet again, new social technology made is possible and easy to connect and reconnect. The next challenging facing us is how we use this new socialized web to move whatever needles we choose. 

Interview with Tim Thomas @imstarboard of Local Motors @localmotors about Community and Real Products

 

I had the chance to ask a few questions of Tim Thomas, CIO of Local Motors Inc., a fascinating company at the edge of crowdsourcing, design and real production products. There is a thriving community of designers and car enthusiasts involved with the company.

The Rally Fighter Tour stopped off in San Francisco and I had a chance to see CEO Jay Rogers on a panel speaking on how the new social technologies can lead to real world products for Social Media Week 2010.

According to Tim, the beginnings of a community started with a placeholder website that interested people could join an email list and be notified when the site officially launched. The community started to build on its own when the website launched and members could enter a series of competitions- they could upload images and share ideas. Now Local Motors Website is now a community of transportation designers and enthusiasts can gather, share ideas and get feedback. With approximately 5000 active members, there is a vibrant community that gather online and offline.

Local motors invited other car and design communities to participate in competitions. They have sent representatives to American transportation design schools, brought the Rally Fighter and involved the students. In addition, they also have other offline events where they invite local enthusiasts from Rhode Island, Connecticut to the shop for "Burgers and Welding".

In my experience, these real life events are key to creating a more significant community. Add that key component to YouTube, Flickr, website, Facebook and Twitter presence, this is one company that is doing it right.

Here's the interview with Tim:

1. Tell us a little about the philosophy behind Local Motors.

Local Motors' mission is to lead the next generation of automotive manufacturing, design, and technology in order to revolutionize the industry with game-changing efficient vehicles and an unprecedented standard of customer service.  In order to accomplish this, we have a high degree of interaction and integration with our community.  It is our philosophy to provide an open, collaborative environment where there is mutual symbiosis between Local Motors and our community.  In our open source model, transportation designers, engineers and enthusiasts can share their concepts and designs for feedback, for collaborating on designs with other members, and for the opportunity for selected designs to be built by Local Motors.  Conversely, Local Motors makes our our technical vehicle specifications and open-source chassis data available to specialty equipment manufacturers so they can manufacture and sell custom parts to spec for our vehicles. 

Our product development process is also open, displaying revisions and milestones as they occur on our website.  This is the absolute opposite of traditional automotive manufacturers that "take a few high-profile designers behind locked doors, and 5 years later pull off the sheet to show the public what they can all buy".  We are as involved with our community as they are with us.  We educate them and celebrate their progress and their successes both on and off of our website, and they contribute their perspectives and ideas with each other, and with our product.  Beyond that, future customers contribute their ideas and suggestions in the vehicle development process, helping shape the product they are going to buy.  It's a win-win situation all around.

2. How much of this came out of the DIY movement?

The Local Motors Vehicle Build experience is one huge differentiator that Local Motors provides our customers, however Local Motors did not come out of a DIY movement.  DIY is not new - I watched my father build a heathkit stereo in the 1960s.  That said, DIY has recently significantly increased in popularity, partially due to the emergence of businesses that make small-scale customized manufacturing available to individuals and small businesses.  Local Motors in particular does have significant domain knowledge of DIY.  Our engineers have designed and manufactured vehicles at Factory Five Racing, a very successful DIY-racecar manufacturer that engineers their vehicles from the ground up.

The DIY movement is a huge inspiration.  Whether you're building cars, airplanes, computers or radios - if you build it yourself, you care more.  You learn more. This experience is essential to building not only relationships but a sustainable process; if you build a Rally Fighter with your children, chances are you will want to keep it forever.  

3. How many people were involved initially? Now?

The idea began to foster while Jay Rogers, CEO, was a Marine in Iraq.  Jay had always loved cars and was hugely influenced by his grandfather who was owner of Indian Motorcycles.  It started with one person wanting to impact the American car industry in a positive way; cars are one of the largest end uses of oil, and if Jay could reduce our need for foreign oil, reduce the need for military solutions, while building cars he loved - that's what he wanted to do.  So he went to Harvard Business School, met his co-founder Jeff Jones and set the business plan for Local Motors. 

The initial efforts of the business were to create a product plan for the first vehicle while simultaneously building out our website in order to grow our community.  At that point there was Jay, the CEO, Karin Ostebo Finance/HR/Office Manger, me and a developer named Andy Cronk building the website, 2 vehicle engineers Mike Pisani and Dave Riha and one Community Evangelist, Ariel Ferreira.  The community grew slowly and has since grown to over 5,000 members from around the globe.  When the Rally Fighter was chosen for development we hired full time designers and now work with two, Aurel Francois and Nyko De Peyer.  Both Aurel and Nyko were hired from the community.  We also work with an excellent team of contractors who help with everything from fabrication and modeling to video production. 

4. What do you think was the turning point (if there was one), where you, as an organization realized "Wow, this community sourced design for real world products is working!"

We have always been confident that it would work.  The turning point you ask about came for other people - the press, skeptics, our community members who wanted to participate in designing a car that would actually be built... they mostly seemed to be cautiously optimistic.  The biggest turning point has been the physical proof - that we actually did build exactly what we promised, on target and on budget.  That and about 60 Rally Fighters have been reserved to date! 

5. You have a great social media presence, I've found you on Twitter, Facebook, Flickr, YouTube, your own website- could you tell us a little more about the goals of putting all this great content out and how you chose the tools?

Really we want to share as much as possible to increase involvement and feedback from our community.  We look at community in a holistic way; Facebook, Twitter, Flickr, and YouTube all help to direct traffic and participation to local-motors.com where people can vote and help design the cars they love. 

As you point out, it is our strategy to maintain a presence where our community and fans can be found.  This is especially important these days, because we now live in a world where people are often likely to seek product advice from each other rather than base purchasing decisions on brand loyalty.  Sites like Facebook and Youtube provide access to both trusted peers and consensus opinions of "the masses", two important sources of influence over present day consumers.  As a result, this is one reason we are committed to providing content on sites like Facebook, Youtube and Flickr.  Another reason is that with the increasing viewership and viral nature of these sites, this is a great way to introduce our products and company to untapped audiences.  Ultimately, those who are interested in learning more, want to get involved with our collaborative experience or who want to become customers will come to our website or visit us in person.

The bulk of our exposure, however, seems to be growing outside of these types of social media sites.  We are getting an increasing amount of great media coverage by sources like Wired (http://www.wired.com/magazine/2010/01/ff_newrevolution/) and Jalopnik (http://jalopnik.com/5398864/local-motors-rally-fighter-the-first+ever-creative-commons-car) for example.  Our CEO, Jay Rogers, is also regularly asked to participate in highly visible business and social media conferences as a panelist.  Additionally, a significant amount of exposure comes from physical exposure.  Our Rally Fighter debuted at the SEMA auto show in Las Vegas, and we have taken it to several off-road rally races, and are currently taking it to the community on a national tour (http://www.local-motors.com/static.php?p=RFTour) so that people can kick the tires and talk to us in person, something we feel is even more powerful than on-line exposure in building excitement and trust.

But to finish your answer, we are always exploring new tools, usually free, that will simplify the dissemination of content.  We use free tools like Seesmic desktop, Tweetdeck and CoTweet to make sure we keep up with Twitter.  We are now using Pingg to schedule events because if it's integration to many resources such as Facebook and Google Calendar.  Shortly we will release Facebook Connect on our website in order to leverage Facebook's social graph and to empower our members to flow content in both directions between Facebook and our website.

We also build some of what we need.  For example, we use Google Apps because it works for us (and it's also free).  As a result, we can build a tour calendar for the Rally Fighter in Google, entering locations and times into the calendar, but then we built an interface between them so that the calendar automatically feeds Google Maps, pinpointing the locations of the events.  We have also integrated the conversation on our website into a twitter account @lm_car_chat, and we have integrated this into bit.ly so that each tweet links back to that discussion on our website, and we display #rallyfighter tweets on the tour page.  Any fresh content that we can automate like this is a huge time and cost savings.

 6. How many people do you have creating content for the social media/community sites? 

Internally, I would say that 5 of us are actively contributing content to our website and social media sites, and we also have 4 people from a partner firm called Kinetic Fin that contributes as well.  There are 3 people who are tasked with updating each of the sites, but this only amounts to a relatively small portion of their day.  Everyone on our team can be reached via Local Motors, and several via Facebook & Twitter.  

Lucky for us, our story is one that people want to tell, and as a result, most of the content is created by bloggers, reporters and our community members.  

Community, Presentation at BIL:PIL

I had a great opportunity to speak at BIL:PIL (video link here and also embedded below, thanks WHITECOAT Strategies), the unconference organized by Jonathan Sheffi as the sister conference to TED:MED in San Diego at the end of October 2009. A few weeks before the event I decided to talk without slides, removing a speaker/audience barrier that is present even at an unconference. It was an intense and interesting experience given the events of the day before, but I was thankful to have the opportunity to listen, speak with and be supported by a community of healthcare game changers.

I'm passionate about the topic of communities; I have been a part of online communities for the past 20 years and have built a few different ones that have thrived. It was a pleasure to be able to share my experience and at the same time learn from others. 

Gilles Frydman was there to talk about ACOR, his cancer support communities, sharing the more than 14 years of experience in patient centric communities. Jen McCabe spoke passionately about patient medical data access and healthcare engagement. David Hale gave a great talk on breaking the chain in toxic events. Ash Damle gave us an overview of clinical decision support and where he is taking Medgle. Dr. Val gave us the reasons and data on patient engagement. David Rosenman of the Mayo Clinic spoke on the changes in healthcare. 

Thanks to everyone who came, discussed and shared ideas, it has been great to be part of the conversation- and dare I say? A community.

BIL:PIL 2009 - Chia Hwu from WHITECOAT Strategies on Vimeo.

Social Media/Healthcare Ideagoras Conference Keynote

 

Final Lunch For Good, I Argue for a Technology Based Solution

It's been a nice series of lunches put together by J.R. Johnson, Chris Heuer, Myles Weissleder and the team at Lunch.com to discuss three topics.

To start off, we discussed "Responsible Participation" (Full Video, I come on at 16:25) and how to encourage conversation. What does it mean to have communities with real names and social contexts. What does it mean to encourage responsible participation? I argue during lunch that participation is not a technology problem so technology can't solve it, that it is much more of a social/societal issue.

In the second installment the topic became, "Promoting Critical Thinking" I again argue that this is not a technology problem but one that is sociological. Our culture does not value critical thinking and the inner life, our constant business and distractions take us away from having enough quiet time to reflect. (Video excerpt)

The third installment was on "Finding Common Ground" and I go towards a technology solution. I think the more we expose the user created content to give context during a conversation, the more human we see "the other". We talk about how there's universal themes of "loving your family" to the mundane, "liking soccer". If we have that information on the sidebar as we are talking about a hot button topic, wouldn't that bring more humanity into the conversation? Would it be harder to objectify the "other" and hate them? If we had technology that could crunch through all of the information and expose the similarities between two people, would that change the conversational tone?

What does this have to do with Community Management? These are all very important- how do we promote conversation? How do we set the tone for the conversation? Having common ground encourages civility and healthy communities. It seems that the Lunch For Good conversations were getting at "How to build healthy thriving communities".

All in all, a great series of lunches. I'm glad that I had the chance to meet everyone and discuss these topics, even if we didn't all agree. Look forward to the next series!

Building a Community is Like...

I've been talking to a lot of different people in the past few months in diverse industries, from healthcare to IT the word on everyone's lips is, "Community". I've started to ask the question, "So, what does that mean to you? What would be your goals to having a community?" and from those answers start articulating what the word "Community" means to the person sitting across the table from me.

I've been thinking a lot about the role that a community of people can play in an organization, particularly in the for-profit world since companies are what I come in contact with every day. The conclusion? Building a community is closer to a political campaign or managing a team of volunteers than anything else. In both cases reliance on the passionate converted to carry the message back to their network is the holy grail and the way is to use the passion and energy for the brand. At the heart of every successful viral marketing campaign are the people, period, end of story.

Anyone else have thoughts?

Chubby Brain Interview

 Old interview from March 2009 with Chubby Brain.

http://www.chubbybrain.com/blog/2009/03/interview-with-chia-hwu-community-manager-at-23andme/

 

A little excerpt where I talk about Community Management:

Tell us a bit about yourself, your background... and what your job of community manager entails?

I primarily interface with members and people curious about the company. I primarily do that through social media – things like Twitter and Facebook and sometimes even LinkedIn. Also, other genealogy/genetic forums. There is actually a group of people very interested in learning about their deep genealogy which our service helps with. And they do their own research so I interface with those people as well.

We also have our forums on our site where people can come on and where people can look at what other people who are part of the service are talking about. For example, there are people who’ve started an adoption thread. A lot of people on the site are adopted and wanted to find out more about themselves. So this is one way for them to find out about their predispositions especially since they don’t have a family history.

The Online Community Manager Roundtable

Got back from @BillJohnston's Online Community Roundtable (appropriately with Round Table pizza) with new social media ideas buzzing through my head.

• Two topics that we got to talking about were the explosive growth of Facebook and how everyone we know in the US is on the network. I tend to think of Facebook as a more intimate party, slightly exclusive in the way that a birthday party for a longtime friend would be. You wouldn't think of inviting a Coke logo that will shout about nothing but Coke all night to it- unless the Coke logo was a fun game or quiz, had some great music or video playing, giving away free stuff all night or adding to the fun in some other way.

• The new way to think of social media marketing is closer to a political campaign where a political party (brand) goes in to a community (online platforms) and engages/energizes a core group of evangelists who are not going to talk about politics (the brand) the whole time. These evangelists will be in different places, some might be in a church group, others the neighborhood watch- and these old forms of community are increasingly being augmented or replaced by the online. Brands need to consider what kind of community these evangelists are in and energize/enable the passionate users to talk about *their* product in the way most appropriate. The tools appropriate for the church group will probably be inappropriate for the hip hop dance class. 

My quickly jotted down thoughts, do you have any?

On the Web Front interview with Chia Hwu and Alex Khomenko of 23andMe

From On The Web Front, episode 16:

In this week’s long overdue episode we are joined by Chia and Alex from 23andMe.com. We chat with Alex and Chia about their startup experiences at 23andMe and at their previous employers. In addition we talk about:

• The 23andMe Research Revolution which allows a discounted $99 rate for your own genetic testing and health traits
• Chia’s role as community manager and how tools like Twitter and Facebook can be used to engage your customer and grow your business
• And why any startup should have good air conditioning

http://www.onthewebfront.com/2009/08/otwf-16-23-and-us/

Check out the other great podcasts that Mike, Gabby, Robert and Stephen do on a semi-regular basis.

About

 

 

Chia Hwu

 

Community Manger, Social Media and Marketing Specialist, Science and Biotech Guru, Project Manager, Event Organizer, Blogger.

 

Chia Hwu, presently the Community Manager for 23andMe, has a strong grasp on how the landscape of marketing is changing with the emergence of Social Media. While her back ground is in Biotech, over the past 5 years she's been offering marketing and branding solutions for startups in the bay area. With her joining 23andMe to handle their grass roots marketing and community management needs, she's quickly becoming an excellentexample of how social media can help engage businesses with the members using their service.

 

Follow Chia on Twitter