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Building Online Participation - Vikki Shaw
Vikki Shaw is the founder of an online web site exclusivley about hepatitis. When Vikki's husband went through a liver transplant she committed herself to provide hepatitis content and one-on-one support online to patients and their families.

Vikki has been a patient/advocate for online support for hepatitis and liver transplant patients since 1990-91. Through her efforts, she helped start the first online hepatitis support board on an online service back in early 1991. She has hosted online chats for Prodigy and AOL and currently hosts two very successful chats weekly for Vikki maintains her own INFO list with approximately 5,000 subscribers. She also hosts an online support bulletin board that is very active with patient/caregiver participation.

Hepatitis Central is now part of the HepWeb Ring, which Shaw helps to maintain. This web ring links over 25 web sites that contain primarily medical information on Hepatitis; this number does not include the various bulletin board websites, personal web pages, or web pages devoted to selling a product or medicine.

Vikki also contributed to the HealthBond article Patients Creating Community Online focusing on the movement of patients toward the internet and online communities.

Vikki Shaw

Question 1 - Vikki: Thank you for hosting this forum. Since the first time I stumbled upon your site, I have been really impressed at the strength and size of your Hepatitis community. When you began your Hepatitis-Central web site, did you envision an online community, or was it simply to get information out there for people to read? In addition, can you please describe the evolution of your community and how it became such a success?

Lynette A. Whitfield
by lwhitfield on June 19, 2000

Answer 1 - Hi Lynette, Thank you for inviting me to participate with your wonderful site.

When I first began my website I had already been doing chats and joining in on the bulletin boards for approximately 5 years, so I already had a "community" in a sense.

My starting the website was actually to provide links
to different pages of information I had found that were hepatitis c related, mainly to the PubMed site. As the list grew, I realized that it would turn into a page so long no one would ever get through it.

I started by putting up a section of "Patient Referred Drs. who treat Hepatitis." Then a section for "Support Groups." and it has grown to what it is today from that.

I decided to put the bulletin board section up so it would
be easier for people to find one another, to get support 24/7, to get questions answered. I NEVER dreamed it would become the wonderful, caring place it has become today.

The success of my particular community (I think) is because
of the people in it. Also one must be completely honest with people. There are times that one will create an enemy because of the honesty. There are some people who get angry when you tell them something they do not want to hear.

If I don't know the answer to something, absolutely, I consult with someone who does. I try to never leave a person waiting for an answer, if its going to be a few days, I let them know that. Working with and supporting sick patients is a very touchy situation and it requires complete honesty. (and Patience)

I also contribute the success of my community to my family.
I have missed many meals with them because I've been busy helping someone else that I felt I just couldn't put on hold. They have been truly the understanding ones.

Developing an online community requires a commitment that is 24/7. There are no vacations. It requires being firm, yet fair. I've had to lock several people out of my bulletin board and chat rooms because of complaints of others. It comes back to the old adage "One bad apple can spoil the whole bunch."

Having an online community has been one of the most wonderful experiences of my life, one of the most rewarding.

Thank You,
Vikki Shaw

by Vikki Shaw on June 19, 2000
Question 2 - Hi Vikki, Your membership of over 5000 people on the list serve is very impressive. Did you market your website in any way or did it grow through word of mouth? Also, did you have to educate people about proper online "etiquette" or were they fairly knowledgable? by yvette on June 20, 2000

Answer 2 - Hi Yvette, First let me apologize for the tardiness in answering your question.

I live in Kansas and our weather is unpredictable here, our electricity went out about 4 AM and was just restored a few moments ago.

As for my listserve, I have never "marketed" it. It is strictly through word of mouth. I do have information posted about it on the front page of my website.

I think most of the new subscribers come from someone forwarding one of my messages on to someone else, and then the recipient of the message then subscribes. It averages about 10 new subscribers per day now. I have it set so that a person can not respond to the list, but can respond directly to me, so I did not have to tell people about proper online "netiquette" in the case of my list.

I do post the proper netiquette for my guest chats for people, but it doesn't always work. When I have a guest speaker and we are using chatroom protocol I have a prewritten announcement that I post every 5 minutes or so, this way people can see what the netiquette is. Of course, There are those times when a user has to be muted into silence because they continue to be disruptive, which is sad. But its life and it does happen. Fortunately, it does not happen that often. People for the most part are very bright and catch on very quickly just by watching others so there really is seldom a problem.

by Vikki Shaw on June 20, 2000
Question 3 - Vikki, As I am sure you are aware, physician participation on the internet is just getting off the ground. Do you have any trouble finding physicians to be a guest speaker with your online chat sessions? They have been very reluctant to use the internet for patient / physician interaction and am curious about your experience. by Terin on June 21, 2000

Answer 3 - Hi Terin, Thanks for asking this particular question.

Oddly enough, I have had Drs. volunteer to answer questions for my chats. I do have an EXCELLENT PA-C who is extremely knowledgeable in the field of Hepatitis C, who guests once a month with me. Those chats are unbelievably popular.

Also, when doing chats, such as the one I do with the physcians CV must be investigated and this does take time, sometimes up to a couple of months. So the physcian can get frustrated in that time frame.

I do wish that more Drs would get involved, it would not only help the patient, but the Dr. as well to see exactly what it is that patients are wanting to know. I also feel that Drs. can learn from the patients by observing these chats. They can get a feel for what is on patients minds, the different symptoms a patient deals with, caregiver problems. The internet is truly a wonderful place to learn AND to teach!

My experience has been good (so far) with Drs. wanting to help out. I just wish there were more of them willing to participate!
Have a great Week/end.
by Vikki Shaw on June 21, 2000
Question 4 - Vikki: It sounds like you have a thriving online community! What were some of the major obstacles that you faced when you began Hepatitis Central, and how did you overcome them?

Thank you.
by Artemis on June 22, 2000

Answer 4 - Hi Sidney, Great question!

I think that the only real obstacle I faced was "me." I was paranoid that I wouldn't be able to hold up my end of the bargain, which was to try and give support to everyone who needed it. I'll admit, that I became (still do) very tired at times, but the personal rewards of easing someone's fears, being able to answer their questions, are wonderful.

I've made some wonderful life long friends doing this. The people that I have been able to help, have helped me to overcome that fear.

Granted, there are people who do get angry with me when I don't tell them exactly what it is they want to hear. But, I have to maintain my honesty and integrity. That can be pretty touch and go at times. A case of "should I or shouldn't I?" One can never be sure how a person will react. But its a chance one must take.

I think that the main reason I have such a successful community is because I too, am a patient that can identify with the person seeking support/help. I've experienced their symptoms (for the most part), some of the same medical procedures, the same frustrations with Drs. who won't listen or who forgot about Hippocrates oath, gone through some of the same medical treatments. I personally feel that I have the advantage here over the Dr. who is doing the treatment or the person hired on to run a support group who is NOT a patient. It makes all the difference in the world being able to say "I know how you feel" and you truly mean it.

by Vikki Shaw on June 22, 2000
Question 5 - What advice would you give to someone else wanting to start an online community? What have you learned to be your successes and what have you tried and it failed? Did you create goals? by tammy on June 23, 2000

Answer 5 - Hi Tammy, Yes, I created two goals when I started out. One was to provide nothing but current information to my subscribers and the other was to support those who wrote to me. I answer each and every email personally. I try to get to it within the same day. I have had times when there has been a week lapse, due to taking a much needed vacation!

In all honesty, there hasn't been anything (knock on wood) that I have tried and it failed.

The advice that I would give? LISTEN TO THE PEOPLE! Listen to them and HEAR what it is they are saying. If you listen but you don't hear, this creates failure. Don't be afraid to make changes, but always follow that "gut" instinct. Always be honest and sincere.
by Vikki Shaw on June 23, 2000
Question 6 - Vikki, Please share some of the member outcomes (not individual stories but overall) you have experienced with this online community (positive and negative).
by tammy on June 23, 2000

Answer 6 - Hi Tammy, I have seen people go from being terrified at the first day of diagnosis to being some of the best educator's and supporters on the internet. I've seen people who had no clue how to send an email start their own support groups!

I've seen others blossom to travel the U.S. to speak at
schools to educate our students on HCV.

The negative experiences I've had... those have been with the people that I have gotten very close to over time, come to work with almost on a daily basis and then they have died from HCV or a car accident. It becomes very difficult for me to continue for a few days, but then I remember that it was because of what I do that I was fortunate enough to get to know them and work with them, so I pick up the pieces and I carry on... holding them close to my heart.

Its been a wonderful experience, this building of an online community. I only hope that I can continue on for many more
Thank You
by Vikki Shaw on July 27, 2000

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