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OpenIDEO has partnered with the Haas Center for Public Service at Stanford University to explore new ideas for encouraging bone marrow donation worldwide. Together we’re asking you, the OpenIDEO community, to help us find ways to expand the global network of potential bone marrow donors and support people who are battling leukemia and other blood cancers.

Bone marrow transplants are one type of treatment for leukemia and other blood or bone marrow cancers. This OpenIDEO challenge will complement the efforts of 100K Cheeks, a Stanford-based advocacy group dedicated to increasing the number of people enrolled in bone marrow registries worldwide. Certain populations are dramatically under-represented in existing bone marrow registries. For example, the match rate within the South Asian* demographic is critically low—with a 1 in 20,000 chance for a potential recipient to find a match.

For more information about bone marrow donation (including the process, myths, and facts), visit  BeTheMatch.org. If you’re interested in becoming a donor, you can look up the registry in your country here.

*South Asia refers to Bangladesh, Bhutan, India, the Maldives, Nepal, Pakistan, Afghanistan & Sri Lanka

We gratefully acknowledge the following organizations for their significant support in making this program possible:




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DeletedUser

You gotta do away with the SCARY, INCORRECT, and OUTDATED term "bone marrow donation". Nowadays, donors donate *stem cells* from their blood. They do not donate marrow! By using this incorrect term in your challenge you reinforce the notion of "bone marrow" donation as a scary, major procedure. It is not. In the old days, hematopoietic stem cells could only be derived from marrow, and hence marrow donations were necessary. Nowadays, the same stem cells can be derived from a donor's blood, and hence the donor is only donating blood, not marrow!! This is the first misconception that should be cleared up in potential donors. Also, no recipient ever receives "bone marrow". Even in the old days recipients only received stem cells derived from donated marrow. Since now the cells come from blood, not marrow, virtually all donations now are blood donation via an apheresis machine that filters out stem cells from a donor's blood and returns the blood to the donor.

Photo of Shristi Humagai Ghimire

25% of time marrow be may derived. I think it depends on what the physician says is best for the patient. or this was what written on Be the Match and various other websites. Also, the doctor I consulted for my cousin's case said stem cells is done 75% and marrow is 25. However, if the physician says Marrow drive is absolutely necessary then this process is done. What folks need to know is, process itself won't hurt because they will be put under sedation since it's surgical procedure. Risks after the process is always possibility with stem cells as well as marrow donation.

Photo of Anuja Singhal

Being a part of the South Asian demographic personally, I had vaguely heard about bone-marrow transplantation. When I came across this challenge, before reading up anything about it, I went straight to the one person who has always been my first point contact to any outside information-my dad. His opinion on this was that he doesn;t know much about it but has heard that it an extremely painful procedure and that may be the reason why people are hesitant to do it unless it's a loved one who is involved. He also asked me to a question that got me thinking. He said "Why do you think people enroll to be in the army and go to the front to fight for citizens of their country who they have never even met?" They die for other people which is a really selfless thing to do. May be we could compare it to that and see it the kind of mentality could work here. We thought about it..and it turned out that it's not really the thought of dying for your country...but the pride factor that brings people to enroll to do such a selfless act. Pride is one thing. But what else could bring people to be a part of selfless activities like these?

Photo of Shristi Humagai Ghimire

I think the simple fact that you can actually save a life literally should be a big factor for people to get encouraged to registered and donate. Process itself isn't painful because you get put under Anesthesia, but people may feel pain in their hips or back or head or something after the process for few days or weeks. Since marrow donation is surgical procedure, there is bound to be some risks. Stem Cell is non surgical but also has some risks like when we draw blood we feel headaches or bruises. It sounds minimal compared to what people go through when they have cancer. Even the transplant may bring complications and may not be successful, but that's often the only option. I feel like we oughta put our comfort aside, and think about how serious and important this really is to someone. It's life saving and their only option. But people really oughta talk about this more and make sure folks understand the process, and don't have misconceptions.

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DeletedUser

I just became aware of openIDEO and this challenge, but I wanted to applaud this effort. I've been involved with recruiting minorities into the National Marrow Donor Program's (NMDP's) registry for a few years now, and have successfully registered over 400 individuals.

I wanted to throw a word of caution out there, though. It is better to register people who are committed to the cause and will follow through if/when called upon, rather than aim for registering large numbers of people, some of whom may not be inclined to follow through if there's a match. There's nothing more painful for a leukemia patient than to learn that there's a donor match, but the donor declined.

Photo of Shristi Humagai Ghimire

I fully agree with what you said Raahul. That's one of the biggest challenge among the South Asian Donors. Many people do not follow through. They decline or move away and do not update their info. This is so unethical and simple inhumane because there are many lives that depend on those donors. People are in death bed, and their only string of hope is a donor that will match and save their lives. I tell people don't register if you can't commit to it fully. It's not fair to give false hopes to these folks.

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DeletedUser

Hi everyone,

Pls. tell me the right path to go, lot of us would like to donate bone marrow in India, but we dont know where to go.

Photo of Shristi Humagai Ghimire

Hi Hema.
There are several recruiter agencies in India. DATRI, Marrow Donor Registry and Asian Indian Donor Marrow Registry. I have posted some information on my facebook page (Save Gita) because I am trying to encourage South Asians to donate. My cousin is currently waiting for a match in India. Please feel free to check out my page https://www.facebook.com/gitaneedsyou

Photo of Sonja Brooks

I would like to see a campaign that encourages African Americans and Latinos to register. I have been a registered donor for three years now and always encourage others to do so. It is a shame for someone to loose their life because there are too few matches.

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DeletedUser

If all schools did programs like this that would greatly help increase the number of registered donors.
http://www.goleopards.com/sports/m-footbl/spec-rel/043013aab.html

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DeletedUser

I am new to OpenIdeo as of today, however, this concept really jumped out to me because of my past involvement with improving bone marrow awareness and increasing the bone marrow database of potential matches.

While in college I played college football at Villanova University, where head coach Andy Talley started his own bone marrow awareness drive.

http://www.talleybonemarrow.org/

It started very small, by having all the members of the football team join the database, and also having us recruit fellow students, friends, and family members to come out to the campus to join the database. In 2008, he partnered his non-profit with Be The Match Registry. The program has expanded to include 29 other college football programs around the country and thousands have joined. A few of my teammates have been donors!! One of which is Matt Szczur, who was drafted by the Chicago Cubs and is in their minor league system.

College athletics has such a large media following and loyal support of fans, alumni, and boosters, that it is an unbelievable way to increase the awareness for the bone marrow registry. I think partnering the two together is a tremendous opportunity, and the foundation has already been laid.

I continue to be in contact with Coach Talley and would love to engage a partnership. If you would like to discuss further, my email is derekmichaeldurkin@gmail.com. Thanks.

Photo of Karen Naalsund

I love this challenge, its such an important cause! I became a bone marrow donor 6 years ago, when i heard about it on tv.

In Norway they now harvest the bone marrow from your blood, so it's not much different from donating blood. But here you have to be a blood donor to become a bone marrow donor. Which for some can be a little too much. But i think getting the word out there, and giving info, will get more people registered.

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DeletedUser

I like where this is going.
I recently organized a bone marrow drive on my campus and I was able to talk to a lot of students about issues with donating marrow.
The biggest issue was the myth that it is painful. Granted, if the marrow is actually taken out of bones, most donors do feel pain for the next few days, the most common method is PBSC (peripheral blood cell) donations. I was told that PBSC donations constitute 80% of all donations. I joined because a close friend of mine had a life-threatening disease, and after her recovery she's using her life to save others lives.

What I feel would raise more donations to the registry is the development of medical technologies. Fear and pain is the largest factors from my experience. If there was a method of donating that would be painless that could be used 100% of the time instead of 80%, more people would join the registry. Just my 2 cents.

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DeletedUser

Very insightful, Neena. I'd add that awareness is an issue. While most people are familiar with the concept of donating bone marrow, it lacks the ease-of-action of blood donation.

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DeletedUser

A bigger inventory of donors and social networking tools that improve awareness still have a long way to go, but are the best way to make strides forward.

Photo of Ashley Jablow

We're so happy to see the conversation continuing, even after the Challenge has ended. Be sure to check out the Realisation phase http://bit.ly/bmc-realisation and let us know how you've been inspired to help register more bone marrow donors in your community.

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DeletedUser

The increasingly dominant communication technologies in the world are now mobile, be they iPhones, smartphones, or new incarnations of computer technologies such as the iPad. Simplifying the the education gap through the use of these technologies is the best way to conduct outreach in places like the US and other developed countries around the world. These technologies are still growing and spreading to all corners of the world, they can be the present and the future of these kind of efforts for the social good. They can also probably bring in many collaborators, sponsors, and most importantly volunteers, as the vast majority of participants are somehow linked in to the communications revolution.

I am a peripheral blood stem cell transplant recipient and I am at day 150+ post-transplant for A.L.L., an acute form of leukemia for which there is no guaranteed cure. I have struggled with this illness since 2008, and my first course of treatment were 8 months of high-dose chemotherapy with average 3 week inpatient hospitalizations. I went into complete remission soon enough, but the toll of that much chemotherapy left me weak and sick for many months, to the point where I had to stop my outpatient chemotherapy treatments to control what is known as the Philadelphia Chromosome, a genetic glitch in the leukemia which actually makes prognosis even poorer, with an average long-term survival rate of only 5%. The remission lasted only three months, and a relapse meant only one thing: My only chance at life was a peripheral blood stem cell transplant. This challenge was compounded by the fact that I am of mixed Chilean, Polish, and Spanish ancestry. The chances of finding an unrelated donor match were pretty bleak from the start. My two siblings were also not matches for me.

Despite my brother's efforts at finding a match among my cousins in Chile, his trip down there to organize their mouth swabbing did not yield any matches. The specter of a second relapse was not a matter of if, but when, and my oncologist insisted that if I did nothing the leukemia would return, and I most probably not be able to survive that.

My friends at work had also mobilized and conducted bone marrow drives, but at most they were able to recruit around 100 people to get swabbed and be put into the bone marrow registry. This is a lot of people to be sure, but in the realm of genetics and bone marrow matching, their willingness to be donors was more an act of solidarity than a real possibility of finding a match. But someone out there may match up with someone in my office, and that is the whole point.

So, why am I still here? The option of my participation in an experimental study with a half-matched sibling appeared from both City of Hope in Los Angeles and at the Stanford Cancer Center. Lucky for me, my sister, although not a very good match (a decent match is at minimum and 8 of 10, and an excellent match is a 10 of 10), was at least a half-match (5 of 10), and that qualified us to be in the experimental study. I am still an experiment in progress. I received my transplant in November 2010, and after two and a half months of hospitalization I am now attending their outpatient clinic for further care. Although I am not out of the woods yet, I am still here and my new marrow and my body are ever so slowly adjusting to one another. The most important thing is that my immune system is slowly reconstituting itself. My recovery should be complete at about one year after transplant.

I share my story because my transplant could have happened much sooner than it did had there been a faster and more massive donor movement in place. I would have been stronger and less damaged by so much chemotherapy that I received. Others are not so lucky and simply cannot hold out for a transplant as long as I had to. We should take advantage of these technological leaps and use them to the fullest to increase education and participation and most importantly, speed up the donor process which will save lives and find matched donors sooner for many that otherwise will never have a chance to beat their cancer. Mobile technologies are also expanding all over the world and in a nation of past, present, and future immigrants, the need for integrating more and more people into the donor databases is key.

One more thing, the majority of transplants are now done through the donation of peripheral blood stem cells - which is essentially a painless removal of these kind of cells from the donor via intravenous extraction - and not directly from the bone marrow. Dispelling these preconceptions is a key element in changing people's attitudes toward becoming registered donors. Mobile technologies can serve to educate and increase participation by lessening the inherent fears that used to be part of being a donor.

Photo of Ashley Jablow

Franz, thanks so much for sharing your powerful and moving story. We wish you all the best - please keep us posted on your progress!

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DeletedUser

I'm a needle in a haystack. How do you find me?

Awareness is key to action. Social networking and online media portals like Facebook and YouTube are mediums in which I spend a lot of time. In order to increase my awareness create a movement, give it a name, post it on Facebook, YouTube and Wikipedia. Attach the movement with a series of events that canvas the world and build a online community to share stories of how lives are being changed. Display a active map of people who have made a commitment to sign-up, support financially and people who have committed to tell others (donors, financial supporters and broadcasters). In essence create the social DNA to support the movement.

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DeletedUser

Get people excited to be a part of something and you've got them moving; arm them with the tools to take action, now you can really see results!! When T-Boz from TLC was looking for a donor a friend and I thought it would be so neat if we were a match for her. We couldn't enough information to even pursue it.....knowledge is power, isn't that how that goes??

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DeletedUser

I am a registered donor because my best friend (and her brother) died from leukemia. I had given blood for years (I got involved in college blood drives), but it never crossed my mind to sign up for bone marrow donation. I hope others who know about this issue from the challenge will register to prevent such deaths.

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DeletedUser

Lack of knowledge, fund and Labs.


Unfortunately the cheapest HLA test in India can be done at All India Institute of Medical Sciences (AIIMS), Delhi for Rs6000 ( $80 ) for HLA Class I and Class II (not high resolution- which is necessary for BMT)

But you will get an appointment after almost 6 weeks, that too on doctors request only. Also there report is not always correct (happens with me)

Other labs cost you Rs13,000 (For Class I test only)

For sending the sample to histogenetics cost Rs10,000 + Rs2000 as courier charges. ( approx $135)

We need adequate funds, labs and knowledge about BMT to encourage people and involve companies to arrange drives.

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DeletedUser

More funding! Most of the Be the Match Recruitment Centers are doing an excellent job in creating awareness and recruiting donors. Many can not do much more because of the lack of funding to cover the $100.00 cost of adding each donor to the registry.

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DeletedUser

I read the comments and was really moved.
Very often one goes his/her way without even thinking about these important issues.
The importance of this challenge and others in the OpenIdeo, lies ,in part,in the fact that they help us focus on these important life and death conditions.
I was also wondering why the number of donors is very low in specific areas.
Is it due to cultural barriers, or any other barriers?
What is the social ethos that helps getting people in certain places to register?

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DeletedUser

It would be worth checking out Aidrian's Army in the UK (http://baldyblog.freshblogs.co.uk/2008/10/calling-on-adrians-army-1.html) and speaking with Aidrian's parents Kay and Keith - a lot of resources have been developed and used in schools / communities.

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DeletedUser

You should check out the work of Alvin Roth who founded the New England Program for Kidney Exchange. This work leverages the idea that friends and relatives of are often willing to be a donor but are not always compatible. The program was designed to match two pairs of incompatible donors and effectively swap kidneys. Each donor was incompatible with her partner but compatible with another donor who was likewise incompatible with his partner.
A similar program might well work for bone marrow transplant. The person in need of a transplant collects all the friends and family who would be prepared to donate. These people donate if and when a match is found for their loved one from a pool of equivalent people somewhere else. The bone marrow is then exchanged.

Photo of OpenIDEO

Terrific conversation happening here! Thanks everyone for your great thoughts, questioning, and ideas.

After reading through your thoughts, we see quite a few potential concepts in here - from re-branding bone marrow donation and telling a more compelling story to providing better education and resources to counter the concerns, fears and other barriers that a potential donor might face. We'd love to see these ideas turned into concepts!

Cheers for your all of your great contributions to this Challenge,
The OpenIDEO Team

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DeletedUser

We need to produce a "Good men" join the bone marrow registry campaign. I've organized over 545 bone marrow drives in just over four years registering over 38,200 people locating 67 matches. I was inspired by my son Giovanni. Giovanni became sick at just 6-weeks-old and by 5 months old doctors from Boston Children's told me he would die if he didn't get a bone marrow match before his first birthday. They added that his chances of finding a match were 1 in 20,000. No problem I told them, I'll just put 20k people in the registry. They looked at me like I was nuts, but I was a father who had heard the most horrifying thing in a lifetime. They told me my little baby was going to die. There was nothing I would not do to save my child including giving my own life. There was no match in the registry for Giovanni ... but he was lucky enough to get a cord blood donation that saved him. We need to build a bone marrow campaign based on inspirational stories that are sustainable. One is Giovanni's story and how he turned me into a bone marrow warrior but there are many others. See this link: http://goodmenproject.com/featured-content/michael-guglielmo-miracle-baby/

The problem with bone marrow donor centers is their operating strategy is based on fate. That is, when they are referred a patient they market a patient drive that compels people in the community of the child, sometimes statewide, rarely nationally, to register in hopes of saving that patient but that is not sustainable because the patient either goes in to remission, finds a match or dies and the movement with them.

NMDP has a few annual campaigns such as the Moms month, marketing campaigns in which celebrities endorse becoming a donor and their annual college football competition, a strategy I question with respect to its retention rate. Indeed, a competition is not an ideal inspiration upon which to base one's commitment to being a life saving bone marrow donor. Nor is one team competing with another to add more people.

Thus, the only strategy that is left to build a sustainable bone marrow movement is one that is built upon an inspirational story that is marketed around the country cultivating a platform that encourages others to join the registry to save a life and exposes this life saving movement to other organizations who then partner with the campaign to encourage its following to join the registry. It most become exponential.

It should be our objective to instill in all who are eligible to join the registry that there is nothing so noble in life then to save a life and being a registered bone marrow donor provides one with that ability with little or no discomfort. Indeed, being a match is so rare it is a blessing.

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DeletedUser

To me, the greatest impediment to more registration is the perceived danger and pain to the donor, augmented by a general but pervasive misunderstanding of what the donation actually requires. Early education and outreach should explain modern cell extraction techniques/technology to de-mystify the process. If, in many cases, the donation process is actually comparable to giving blood, that should be the lead-off item. LOTS of people give blood, or are at least not afraid of it. That process is a far cry from the old-school "punch" that many people still associate with a "marrow" donation.

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DeletedUser

I think this is a very achievable challenge for such a site like Open IDEO. It seems this will be a challenge of information and changing the general perception of "bone marrow transplants". And there is no faster and no more powerful way to share information than through the internet. I had always thought that such an operation consisted of a doctor digging into my bones. If what Eva Jettmar just posted is true about it being a blood donation more than anything else, there is really a lot we need to share with the public to change the view of a "bone marrow transplant"... or should I say, "stem cell transplant".

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DeletedUser

The term "bone marrow transplant" is incorrect IMO, too. It should be "stem cell transplant", or "hematopoetic stem cell transplant".

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DeletedUser

Something that bothered me about this was the information around cost.

On the http://BeTheMatch.org website, it says you "sometimes" may need to pay $100 to join the registry. However all the information on this challenge suggested that it was free to register, akin to a blood donation. If volunteers need to pay $100 to join, that is a BIG considering we should work with on this challenge. Additionally, why "sometimes" pay $100? Very odd and off-putting from a volunteer POV.

Photo of Jeff Mowatt

I knew next to nothing about bone marrow transplants until being diagnosed with CML last year. It's a very manageable condition I discovered.and put it to one side.

It wasn't that that brought me here. I read the tweet about human centered design and since I've been engaged in people-centered initiatives against poverty, thought I'd join in.

When call upon for a bone marrow sample, I told the doctor that I keep positive by considering something bigger than myself. That of course is those most disenfranchised and least able to benefit from the treatment I receive from the UK National Health Service.

Photo of Paul Wood

I know close to nothing about bone marrow transplants but the first thing that came to my mind was to design a campaign that made it seem less scary. Going inside my bones! ahhh!

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DeletedUser

Added an inspiration, but didn't work; no time to re-do. If want to educate girls from young age to influence adulthood or giving of cord blood at time of pregnancy, suggest educating them that perceived 'garbage' of giving birth is not garbage to others. Many tactics to explore.

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DeletedUser

Better education and a change in state laws regarding paid leave of absence for donors.

I am currently in the process of running an on-line donor drive and I have found that the biggest road block seems to be that people believe that bone marrow donation is extremely painful and potentially dangerous. They do not understand that with new technologies, the process is less intrusive and less painful than it has been in the past.

The other road block is taking time off from work and not getting paid. Donors need to be educated regarding the laws in their particular states. For example, California just recently enacted a paid leave law for donors. For states without paid leave laws, work needs to be done to lobby passage of laws supporting organ and bone marrow donors.

Photo of Anne-Laure Fayard

An excellent challenge indeed.

I received 2 weeks ago about a similar issue...
It particularly touched me because my daughter is Nepalese. However, I did not do anything. In that case, I thought she was too young and I was scared about the procedure. Now I'm going to read about the transplant procedure.

I could not find the email message I received but I searched and found a campaign organized for this 3-year-old boy Rayan, from Pakistan who has Acute Lymphoblastic Leukemia. They seem to have done this campain on http://yellowcabnyc.com because many cab drivers are from Asian descent.

As I was trying to find this case, I also found another case: http://divanee.com/2011/01/25/south-asian-bone-marrow/
Here again, the family and friends tried to reach out through online media. In fact I found many other similar stories.

I've just reviewed a paper on motivations and voluntary participation in online communities. There was a literature review on the psychology literature on motivations. It is a bit different as the challenge there is knowledge sharing, but I'll read it again as there might be some interesting insights.

Looking forward to think about this challenge

al

Photo of andrea schneider

This is an excellent challenge and one I identify with personally. A rough breast cancer diagnosis, catalyzed me to add a bone marrow transplant to my own treatment plan. While it isn't done anymore for breast cancer, It was still an option in 1998 at the University of California in San Francisco. I went for it.

Learning my bone marrow was cancer free, I was able to be my own donor. However, I needed PBSCs (Peripheral Blood Stem Cells). A friend of mine was a match and he donated several times. I treasure this friend.

I'm going to ask him why he donated. Finding out why people donate may help inform an effective education campaign. Seeing yourself in the picture, tackling cultural barriers appropriately, and demystifying the process, might help motivate other people.

I find most people didn't understand what a bone marrow transplant is or understand how they could help in simple terms. In addition, access for testing and donation was important. My friend was willing to travel from the South Bay to San Francisco, but I'm not sure that's the norm.

I'd be happy to think more about this challenge, it's a good one!