Focus Group Ground Rules:Should They Apply When You Consult Patients?

When you are asked questions before you start a survey, or before you are invited to a focus group for market research you might notice that you are almost always asked a few questions before you can start the survey or be invited to a focus group.

Imagine the topic is banking. You'd be asked:

Do you or does anyone in your family work now or in the past in market research, advertising or media?
Do you now or did you ever work for a financial services provider?

If you said yes to either you would not be invited.

These are the basic questions and they're designed for two things. Sometime to keep the client's competition from learning about the client's plans or to ensure that the other focus group participants are comfortable voicing their opinions.

Focus Group

In the 20 years I spent organizing focus groups this never changed. We often asked our clients for clarification, or a bit of stretching the boundaries to make our job easier but this was never an area where there was flexibility.

When we asked for exceptions the answer we got was this:
As we go around the table and give each person a chance to speak and give their opinion, the dynamics of the discussion change dramatically after someone who is considered an expert gives an opinion on the topic of the group

No one wants to be at odds with the person who is seen to know more than the others because of experience. The person who 'knows the topic' has an overweight influence on the discussion whether they mean to or not.

I heard this point of view from another perspective at the HCSMCA Unconference in Vancouver. In a conversation with Dr. Paul Dempsey he talked about setting up a Moms group on his website so parents could support one another. He found that a lot of the wisdom of  'Dr. Mom' flowed among the participants - until he stepped in. The conversation stopped when he (the expert) started to take part.

This can make a difference when organizations, government or organized groups try to hear from patients. 

Everyone's opinions are valid, but I would suggest that when there is a broad range of experience among patients, especially when some of the patients are or were health care professionals or health care workers, that holding separate focus groups would produce a better range of opinions and include more voices.

The Expert Patient

After a few years with a chronic illness we certainly become experienced, but that alone does not make us experts.  Achieving expert status takes work.

                                We Are Experienced

Does it really take 10,000 hours to become expert? In the case of illness endurance alone is not enough.  You've got to go out of your way to find out more. Educate yourself and you may become a knowledge expert, a support expert or maybe a connector or aggregator who puts information and people together for everyone's good.

I have found active Yahoo Groups in specialized areas. Sometimes the level of information available is due to one dedicated person.  Often it is core group which patiently covers the topics over and over as new people come along with an acute problem, use the advice and move on as their problems resolve. It's hard to keep a group going long term and many of them are gone when you go back a few years later.

I was lucky to find some real experts who saw me through two bouts of shingles.  

Illustration from Atlas of Human Anatomy, Frank Netter MD. Illustration showing how shingles spreads in bands (Dermatomes) on the body

When I went looking for a group with information about Fuchs Dystrophy I think I found the motherlode at a Yahoo group called fuchsfriends which is "a place of support and information for people with Fuchs' corneal endothelial dystrophy"

                                                 ehealthwall.com

These "patient experts" are so much help because they not only have a narrow focus on a specific disease but also they also have personal experience.  I am a member of another group where the moderator's signature is "Gina, Not an MD". Her advice is so good that the disclaimer is necessary. (Of course all such groups come with an additional disclaimer saying advice is not to be construed as medical advice)

Online support is a valuable commodity and I am lucky to be in a very long term supportive group at ra-factor.  Gilly, the group owner and "list mom", is one of the most empathic and consistent people I know.

                               Valuable commodity  dhotw.com

She said she does it because she can't imagine not doing it. Even on vacation she wonders how we all are doing.  She says "It's nice to talk to people, like a family" And after many years of conversation with these friends who "get it" because their problems have similarities to mine I would like to go visit them all in real life.

It would be quite a journey - to the UK, Australia, Canada and all over the US. Where but online would we ever have met and shared so much ?

And here we all are (approximately):

There are complaints about this map. More people wanted to be the cat than anything. Others said "Where are the dogs?" Our Texas member said we might as well just put a gun on Texas based on some current political moves.

                              A favourite "Welcome to the Group" gif