Earlier today Jess and I participated in a conference call with Ambre Morley the Associate Director of Product Communications from Novo Nordisk in response to this post. In addition to my post, Jess had sent an e-mail expressing her frustrations to a contact that she has at the company.
Misunderstandings from both sides of the table led to the frustrations and anger expressed on Twitter and in the post.
Hopefully this post can add some clarification by providing both mine and Jess’ feedback from the conversation.
First of all, I offered to and have removed the pictures of the facilitator from the previous post to, as I see it, protect his integrity since he cannot provide his perspective on the situation. I did not alter any of the text of the previous post and stand by everything that I wrote.
Any comments connected to that post have been approved as written and the only moderation of comments that (at this point) I believe in doing on my blog is to remove obvious spam. If you have something to say, I believe other people should be able to read it.
Because of the busy schedule of Friends for Life, most of the people in the room (my entire table) arrived late to the session and may have missed the introduction that explained that the facilitator would be asking questions that may seem obvious. An online community member who was there for the whole session said that she also did not catch the disclaimer.
One suggestion that Ambre was very open to hearing was making sure that people who come in late to their sessions would be briefed on what was happening in the room. Laura Billetdeaux from Children with Diabetes had told us that if we didn’t like a session to get up and leave and try another – I am sure that we are not the only ones who walked into sessions late throughout the week.
The facilitator of the session has worked in the field of diabetes for ten years. As Ambre stated during our call they have to ask question that may sound silly or where the answer sounds obvious to us but she emphasized that “if we don’t ask the questions, we can’t say we know what people with diabetes feel like.” The people working at Novo may think they understand the wants and needs of the people within the diabetes community but without our words they can’t take that information back to the company as research. I can appreciate that.
Another point of contention was addressed by Jess in her e-mail but I did mention it specifically in my earlier post – however it had been tweeted about during the session. That is the issue of privacy. I know that the point of a focus group is providing information to an organization about a product or a topic. However, when applied to something like diabetes that we live with 24/7, I think it enters dangerous territory.
We often live with the “numbers” of our condition being an assessment of our control and our competence in managing the many details of life with diabetes. For example, during the session we were asked to raise our hand to identify our A1c levels. I don’t think that is information that needs to be shared verbally, even in a focus group setting.
I can partially understand the issues that Novo was facing in the focus group. For my job, I often find myself presenting in front of groups and sometimes those groups are not as interactive as I would like. My typical approach to encourage conversation is to pick someone in the group who I know and call on them by name to respond to a question. The difference is that I am not asking people to provide private medical information and the focus group had the potential to do so.
I believe that Ambre understood the feedback from us in being sure to emphasize in future sessions that no one feel pressured to share and that people would be given the opportunity to share the desired information privately if they would prefer.
Ambre, Jess, and I may not have ended the conversation in complete agreement but I believe we have made progress from the initial post and follow up comments. I can appreciate the difficulty for the groups on both “sides” of the issue. Their focus groups are closed and not videotaped or recorded. They can’t disclose what happens in the room, and as participants, bloggers like Jess and I are only able to share what happens from our perspective. As the diabetes community grows, I expect that this will not be the last time that there is a discussion similar to this between a pharmaceutical company and members of the diabetes community.
As this week’s DSMA discussion indicated, the diabetes community – both online and offline – is growing in our voice and our reach. I hope that companies like Novo Nordisk will continue to be in a place to listen and I look forward to attending their focus group next year at Friends for Life.
I am glad to have had the opportunity to speak to Ambre on the phone. My feedback needed to be heard. While the conversation may not have resolved everything, I feel like we definitely found some common ground.
I think Ambre left with some solid suggestions to use in future focus groups. I did still leave with the impression that we should not have been upset by the questions at the session. But the bottom line is that Sara and I were upset. I understand that that was not the intention, that Novo does a lot to help people with diabetes, and I am thankful for that. But we were still offended. And that’s ok. We may never all see exactly eye to eye on the situation, but that doesn’t mean we’re not on the same side.
Am I still upset by some of the questions and the way they were asked? Yes. Does that mean I would never attend another Novo focus group? No, it does not. Nor does it mean I think others shouldn’t go. These focus groups do important research, and our voices need to be heard. We should go if given the opportunity.
Is there room for improvement? Yes. But hopefully Ambre and others at Novo can incorporate our suggestions for use in future sessions.