For our next spotlight series, I talked to Sadie Whittaker, Ph.D., the new Chief Scientific Officer (CSO) at Solve ME/CFS Initiative (SMCI). Sadie has previous experience in Biotech and Pharma, in clinical development for biologic medicines, and in strategic leadership roles for advocacy, policy, communication, and external engagement. We talked about her path through industry and into patient advocacy, her opinion on where current ME/CFS research is going, and how collaboration is the key to moving the field forward. Keep reading to learn more! 

Hi Sadie! Thanks so much for taking the time to meet with me. You have your Ph.D. and have previous experience in the Biotech industry. Can you tell me a little bit about yourself and your scientific background?

Hi Courtney! Sure! I got my Ph.D. in Biochemistry and Molecular Biology from the University of Birmingham in the UK, and my thesis project was looking at the molecular basis for self-incompatibility in plants, which is really a model for the immune response. It’s a molecular mechanism that plants use to reject pollen that is their own, so it’s used as a model for human immunity. Right out of school, I knew I didn’t want to focus on bench research as I felt I needed to be a bit closer to the clinic. I started my career at Amgen, which is a Biotech company out here in southern California, and worked there for 10 years in clinical development and in medical affairs, predominantly in oncology. In clinical development, your main task is to figure out how to design a strategy that will evaluate whether a potential medicine that shows promise will become an effective treatment. In oncology, new treatments usually add a few months to life expectancy, which may seem trivial. But what actually happens is that each new treatment sets a higher bar, so that over time, you have extended life by years.

After my work in clinical development, I transitioned into medical affairs. Medical affairs is an umbrella term that is used to describe anything that isn’t clinical development! It is creating and executing a strategy to communicate and engage with the healthcare community about the clinical data. Essentially, we figure out what the best approaches are to reach nurses, doctors, pharmacists, payors, and the government with information about a disease and the drugs that we’re working on to treat it. In this role, I established a partnership with the CDC on a program to raise awareness of infection during chemotherapy. Chemotherapy wipes out your immune system, and if you pick up an infection when you have no immunity, it can quickly lead to sepsis and even death. This program has been running for 10 years now, and I am extremely proud of the impact it has had. The program was also the start of my interest in public health. I decided I wanted to dedicate more of my time and focus to this area, so I left Amgen and went to establish and lead the west coast arm of a healthcare communications and advocacy agency that worked closely with global public health bodies. I’ve continued to work on public health campaigns through my own consultancy.

So how did you get involved in the ME/CFS field?

When I was first approached about the job at SMCI, I really didn’t know anything about ME/CFS. When I did find out about it, I was absolutely horrified to learn how underserved the population is. It seemed like an area of public health where I had the right skillset to be able to make a difference for people who needed help. I have the scientific background, I know how clinical development works, I have the connections in the Pharma and Biotech industries, I’ve done policy, advocacy, and communication work, and I’ve worked with public health bodies. So, I just felt like I could do something to help and that I had an obligation to do so!

You said that you were horrified when you first found out about ME/CFS. Can you elaborate a bit on your impressions of the ME/CFS field when you first got involved?

Yeah, of course. My first impression was that I couldn’t believe people think this is an imaginary disease. That was just mind-blowing to me. My second thought was, given that it’s such a small community, is that there is an opportunity to collaborate more to accelerate progress. No politics, no silos. Everybody should be doing everything they can, and sharing what they know so that there can be a real benefit. Maybe that’s an overly optimistic view, but I feel like in an area like this, we really could benefit from increasing collaboration. 

What are your plans and priorities as the new Chief Scientific Officer for SMCI?

We have two main priorities. We’ve already talked about how we need to improve collaboration. And that’s not just among researchers, but that’s with the government, with patients, with physicians, and with hospitals. How do we serve as that central collaborating force? When multiple organizations come together around a shared goal, you have a synergistic force that allows you to achieve even more than if you were working separately. The second is, can we put patients more in the center of what we’re doing in research? For example, this year for the first time, we have integrated two expert patients into the review process for the Ramsay program, alongside researchers and clinicians. We want to hear from patients whether they think this research is valid.

Another area where we’re integrating patients is with our registry. We’re in the process now of speaking to the patient community and saying, what information do you want to share? We know there’s an issue with standardization of data collection, but beyond that, what is important to you? How often do you want to record data about your symptoms? How do you want to share it? Can we integrate digital health and incorporate the use of apps? How could wearables help capture data and what does that look like? We want to know the frequency and mechanism of data collection that will make it as simple and easy as possible. Not just for patients who are at the high-functioning end of the spectrum, but also for patients who are severely ill.

The registry is a huge focus for us. Coming from the oncology field, and coming from Pharma and Biotech, I’m a huge believer in big data. If you have enough information, you can really drive discovery. So I think the registry and the biobank are absolutely central to everything we’re doing. Within that, I’d like to see if we can make it global. So rather than it being just US-focused or just with SMCI, how do we collaborate domestically, and how do we work with other countries? I’ve already had initial conversations with the UK ME/CFS Biobank at the London School – they want to collaborate and work toward this global vision. How do we continue to grow a partnership so that we’re all collecting data in the same way and creating this big database?

That sounds great! You mentioned that you have experience already in advocacy roles. Maybe you can tell me a little bit more about that, and also, do you have a plan on how you would use that expertise to advocate for ME/CFS?  

Of course – an Ebola campaign I was involved with is a great example of how the advocacy and policy world intersects with healthcare communications. The goal was to encourage behavior change in a West African population via a three-pronged campaign. First, it required health workers access into the country. We also needed to work at the local government level to make sure that they provided health workers, and provided adequate training and funding for them. And finally, at the U.S. domestic level, we did a big event on Capitol Hill. The event served to follow-up on appropriations that had been committed to help in West Africa and drive awareness beyond the headlines on the disease – that it is, in fact, still affecting hundreds of thousands of people. So, my experience of this type of intersection is that it can be very powerful. And, we got to work with Idris Elba, so that was a bonus!

The other positive aspect of the Ebola program was that we partnered with a large advertising agency, who did all the work for free! As a result, the creative output was so compelling that we were able to attract a lot of earned media. I would love to explore whether we can adopt this model for ME/CFS.

The other thing I’d like to do in research is communicate more about the work we’re doing and use data that’s coming out of the field to raise awareness among clinicians and the general public about this disease. We plan to mobilize the upcoming patient registry to not only power studies, but also to create awareness and communicate the scope of the problem in a way that will be used to drive specific policy or advocacy options. We are also looking to our Ramsay Award Program to leverage communications. One of the goals of the Ramsay awards is to stimulate NIH to give bigger R01 grants. So, we want to make sure that NIH knows exactly what research we’re funding, and make them aware of particularly compelling, preliminary results. NIH funding decisions are driven by researcher demand so we need to make sure we create a springboard for researchers to apply for NIH grants, and make NIH conscious of the demand.

Do you think that there are any important advances happening right now in the ME/CFS field? 

Well, I think that the NIH collaborative centers are a great move forward. We’ve also recently funded proteomics work that Dr. W. Ian Lipkin’s group is doing on a study cohort that has already undergone metabolomics and gut microbiome analyses. Creating a dataset where you’re taking the same group of patients and completing a multi-system look at different scientific aspects is such a promising approach. We’re really excited to have provided the funding to facilitate this study. Another thing we’re really excited about is the Accelerating Research on ME/CFS conference we’re partnering with NIH to develop, coming up in April 2019. We want to ensure the time is used to really accelerate discovery. Collaboration is always important, but in this field, it’s critical. I’m a huge believer in it, and everything that we’re going to do in research is going to be focused around that principle, and in answering the question, can we partner with someone to get the work done better and faster?

That’s awesome that that’s such a priority to what SMCI is doing. Collaboration is definitely critical! Do you have anything else you want to add?

So again, my priorities are collaboration, patients first, and using research to communicate and raise awareness. That’s the thread that runs through everything that we do here at SMCI. And it would be good for people to know that our doors are open! If they have ideas for collaboration, or ideas of things that are missing that they think we should focus on, we would love to hear from the community.

There is always room for more great ideas. Thanks so much for talking with me, Sadie!