How to Maintain Privacy While Taking Your Drive Public
The first thing you need to figure out is just how public are you going to be with your drive efforts? Some patients are willing to go public from day one but the majority of patients in need of a bone marrow or stem cell transplant prefer to remain anonymous with as little attention focused on themselves as possible. The need for privacy can be challenging if you don't want your name or photo used to publicize your donor drive.
As a patient you draw the line on what you are willing to share. As an advocate you must respect
a patient's feelings regarding privacy. As a donor recruitment advocate you may feel like your hands are tied and you may often feel you need more information then you are receiving or are allowed to share with the public.
Whether you are a patient or advocate
don't despair, there is still plenty you can do to help recruit new donors to the National Registry.
If a Patient Says No to Any and All Publicity
Always Ask First before you post anything you think might cause a patient concern.
- Do not put anything on the internet if you are unsure the patient is comfortable with it. Once it is online you can remove it but you can't make it private again. Once you place any info online you can consider it there for good. It can be copied, archived and shared between the time you post and remove it.
- If a patient simply refuses to go public but you want to recruit new potential donors to the donor registry to help find a match for them here is one solution: Find another patient of the same ethnic background who is already publicizing their need and do everything in your power to support their donor drive efforts. This will help the person you want to help because everyone who joins Be The Match is entered into the nationwide donor registry and everyone who needs a donor match will be matched to each new potential donor in this database. Just make sure that the patient you do support is of the same ethnic background as the patient you want to help.
- You can find other patients currently seeking matches listed on most donor program websites: For Ethnic Minority patients visit AADP, A3M, and the Cammy Lee Leukemia Foundation.
- My advice would be to simply use whatever information a patient is posting on their own website or public profile. While you may want to contact a patient to ask for more information or to create a connection with them, know that their plate is probably more then full. Making introductions in a blog post is a nice gesture but please don't expect a reply. I can tell you first hand that patients and their volunteers are most likely completely overwhelmed just dealing with their illness and keeping in touch with their existing contacts between family and friends. This is not the time to create an extra burden for them to feel obligated to respond to private or public messages you may be tempted to send or leave for them. Leaving uplifting messages are great, asking questions should be kept to an absolute minimum.
If a Patient Wants to Set Up a Drive
- Create a team to help you. If you are a patient you can choose to allow your family or friends to be your donor drive "team," interfacing with the public and media on your behalf whether it is through your website, blog, Facebook or Twitter. Creating a "layer" of people/supporters will shield you from the stress related to mounting the drive effort. IMO you are the patient and your energy should be saved for getting well. So if others are offering to help, let them help reduce your stress level.
- Do not include a personal phone number or home address anywhere. Rent a PO Box if you need a mailing address. Rent the smallest size available. The Post Office will hold larger packages for you or place them in lockers so there is no need to spend a lot of money on this. If you need to use a phone number my best suggestion is to use a throw away number of some type that doesn't reveal any kind of cross reference to a patient's home address. For instance I used my business phone number to help my cousin Tami. I never posted any contact informaion to Tami directly.
- Don't include the name of the school a child attends
- Don't include the name of the city the patient lives in
- Don't include too much information about the treatment hospital the patient is being treated at. In Tami's case I did reveal she was being treated at Fred Hutchinson but never mentioned her doctor's names or which building she was being treated in, her treatment schedule (like exact times) or the name of the outpatient house she lived in for several months before being discharged.
- If you create a custom website with a custom url be sure to protect your privacy by either using a PO Box address to register your domain name (url) or be sure to pay a small annual fee to Whois to protect your anonymity. EIther way is very easy to do, you can do one or the other and the cost is minimal. If you don't take either precaution your private information will be available to the public at large.
- You don't have to reveal your full name. In launching the Helping Tami drive effort I never disclosed Tami's last name.
On a Website, Facebook, Blog, Twitter and in Public
- You don't have to reveal the city or state you live in or the hospital you are being treated at. Local publicity may help to rally your local community but you can just as easily focus on nationwide and international drive efforts as over half of the matches that do take place come from donors who live in a different country then the patient.
- If you start a blog you can choose not to allow readers to leave comments.
- If you receive inappropriate or upsetting messages via your website or blog it is best to simply ignore them. If they are threatening be sure to notify the police as IP addresses can be tracked when warranted. This is another reason why it is good to allow your "team" to deal with all messages as patients need as little stress as possible in their day to day life to allow their focus to remain on their treatment and healing without undue stress being added.
- Create a generic name like "Team ______" or "Friends of ______" to be the writer of a blog, reply to emails or respond to mail.
- Use a generic email address like info@ rather than names.
- If it's possible to even use a single photo of the person in need on a website or blog it will give potential supporters something to connect to. The photo does not have to be a close up head shot. Even a photo from a distance will work. If you are maintaining as much anonymity as possible make sure there are no landmarks in the background of any photos you post online.