Parkinson's Foundation Pro Bono Project: Team Experience

Parkinson's Foundation, 2019

Parkinson's Foundation Pro Bono Project: Team Experience

Parkinson's Foundation, 2019

Recently, our BluePrint Pro Bono team completed a project with the Parkinson's Foundation. We had a conversation with the team (Conrad Tenenbaum, Senior Consultant, Marian Bergkamp, Consultant, and Katie Naspo, Research Coordinator) to learn more about their experience working on this project.

Let’s start from the beginning. How did you get involved in the Pro Bono project?

Katie Naspo: I had a conversation with my manager about ways I could contribute beyond research coordination, and he suggested I get involved with Pro Bono. Once I learned more about it and what it would entail, I thought it’d be a great opportunity.

Marian Bergkamp: Before BluePrint, I did a stint working for a social impact venture capital fund, and it sparked my enthusiasm for for-profit companies that also find ways to have a positive social impact on their local and global communities. BluePrint’s pro bono work is one of the reasons I joined the company, so when the opportunity to work on this engagement came up I immediately said yes!

How did the project get started? What was the client looking to learn?

Conrad Tenenbaum: We had our first conversation with the Parkinson’s Foundation at the Columbia University career fair. When we discussed a potential partnership with our Pro bono team, they told us about a couple different initiatives they were working on, one of which focused on supporting newly diagnosed Parkinson’s Disease patients. We had a few conversations about the ongoing initiatives where they could use help, and we discussed where our capabilities might best fit their needs. Ultimately, we decided together which of their projects would be the best fit for our partnership given our capabilities and their priorities, project goals & timing needs.

After aligning on the project, we worked with the team to understand the key outstanding questions and to define the research approach to address those questions.

What were the questions that you set out to answer with the project?

Conrad: The Parkinson’s Foundation team wanted to gain a better perspective on the role of General Neurologists in diagnosing and managing Parkinson’s Disease. They had established good connections with Movement Disorder Specialists and had focused on outreach to those physicians in the past, but they also understood that newly diagnosed patients are typically first diagnosed by General Neurologists. The Parkinson’s Foundation team wanted to learn more about the diagnostic process, what the initial conversations are like, the resources that are shared with patients at the time of their diagnosis, as well as their unmet needs. They also wanted to get feedback from General Neurologists on informational materials that they were developing for newly diagnosed patients.

How did you go about answering the client’s question?

Marian: We ended up doing a qualitative research study where we interviewed 17 General Neurologists. Similar to our projects with pharmaceutical clients, we put together a proposal outlining the objectives, scope, methodology and timeline. Generally, this project was like other projects that we do with pharma clients, but the timeline was longer. We knew that recruiting & fielding would take longer because the physicians are donating their time.

We shared regular status updates and kept a tracker with our timelines for when we needed to receive items from our client, so we would make sure we had what we needed to write the discussion guide and create research stimuli. Since our client was new to the kind of qualitative market research we do, we spent more time explaining the research process and the components & project materials that they weren’t as familiar with.

Could you each tell me a little about your role on the project?

Marian: Katie is usually our Research Coordinator on projects, managing the day-to-day recruiting and fielding process. But on this project, she took on both the Research Coordinator and the Associate role. She managed the physician recruitment and drafted the initial materials, like the discussion guide & interview stimuli. Katie sent regular recruitment updates, and I handled most of the communication with the client. Katie and I iterated on materials to get them ready to share with the client. All 3 of us moderated interviews with physicians.

Katie: It was a great learning opportunity for me to see a project from start to finish and to be involved beyond research coordination. Having the extended timeline was the only way that might have been possible, so we could have the time to devote to the project.

Was there anything interesting or surprising you learned from the research? And what impact did this research have for the client?

Marian: One of our client’s questions was around the General Neurologists: Do they provide materials to newly diagnosed patients, what materials are they using and how are they used? We found that this was inconsistent and often not very organized. There was a level of randomness to how practices were sharing information and materials with patients.

We also asked for feedback on the patient-focused materials that the Parkinson’s Foundation was developing, and they made some changes to the materials based on physicians’ feedback. Some of the changes were to clarify language, and others were focused on communicating the messages in a way that would be well received by this audience. The client wanted to reduce the potential for General Neuros to hesitate to share materials with patients because they disagreed with them. Connecting with newly diagnosed patients was a big step that the Parkinson’s Foundation was taking, as they are usually connecting with patients at a later stage in their disease. It was valuable for their team to understand the perspectives of stakeholders involved at this early stage.

This research helped them to define their focus and confirmed the importance of the initiative. More generally, they got a sense of the value that market research could bring, since they were new to this kind of process.

What did you most appreciate about working on this project?

Conrad: This was an interesting project because the results of the research challenged some of our client’s assumptions. Before this research, our client thought the General Neurologist plays a secondary role in Parkinson's Disease management, focused primarily on diagnosing and then referring patients to Movement Disorder Specialists for treatment. But we found that, in fact, General Neurologists are central to patient management across stages of the journey, including treatment. That new level of insight has a major impact on this initiative and their approach to outreach generally.

Marian: I really appreciated the level of engagement and excitement from our Parkinson’s Foundation clients. Because they were new to market research and the way our projects work, there was a lot of interest in the process and enthusiasm around the insights that we were generating. They were really engaged when we read out the results with them. There were lots of questions and a-ha moments from the new stakeholder they were learning about.

Katie: For me, it was great to be involved in the project from the start to finish. Normally, I’ll be involved in recruitment and fielding for projects. I don’t usually see the final results or get involved in helping to shape the project materials and outputs.

What else might others want to know about working on pro bono projects?

Marian: Overall, it was a great experience for both our team and the Parkinson’s Foundation. It was really rewarding, and I’d recommend it to anyone. This gives you a way to contribute to projects in way that is newer to you and also feel proud of helping out a good cause by still doing what you do best. It also pushes you to take a step back and look how the work we do can help understand other problems for organizations that are newer to BluePrint or market research. It’s helped me to think more critically about how we design research.

Conrad: I agree with what Marian mentioned. And internally, it’s a chance to do something a little different than what you have done in your usual project work. It’s rewarding to work with a non-profit organization like the Parkinson’s Foundation, to help support their initiatives.

Katie: Working on a pro bono project also gives you the opportunity to work on projects with people you wouldn’t work with day-to-day. We are all on different teams usually, and it was interesting to have the chance to work outside our usual teams.