Dr. Google will see you now. Really.
I often refer to Dr. Google and the consultations done on our own with the assistance of free online medical information. I also talk about how companies such as Google can track our activities online, and despite what we think might be private conversations, most everything we do online is visible and trackable by Google and other companies that mine data on the web. I’m not particularly paranoid about Google following me and no longer question the fact that if I put it on the web it is fair game for their data gathering software. It's the price I pay for using their products.
I am equally certain we should raise questions when Google moves out of the online information services into the health care business, and is doing so in partnership with the dominant Multiple Sclerosis drug manufacturer, Biogen Idec.
It was announced in January, via the financial pages, that Google[x], the life science division of Google, will partner with Biogen Idec to track patients and try to understand the progression of multiple sclerosis. According to the story released by Bloomberg News, ‘Using sensors, software and data analysis tools, the companies will collect and sift through data from people with the disease. The goal is to explain why multiple sclerosis progresses differently from patient to patient, said Rick Rudick, Biogen’s vice president of development sciences.” According to the same article, Biogen Idec is "on a mission to use new technologies to collect round-the-clock data on patients."
Quite by coincidence, while working on this article, Susannah Fox, the Entrepreneur in Residence at the Robert Wood Johnson Foundation and a self-described health geek who over several decades studied and helped to transform and understand online use of health data, wrote about Google and other giants in the information industry striving to leverage their strength in other ways in healthcare knowledge. It was a surprise to see my name and a link to iConquerMS™, alongside notable individuals working on their own transformative projects, in the same article with Google, Apple and IBM. In What Health Care Can Learn from Mike Mulligan and His Steam Shovel, she gives them credit for at least trying to do something different, and looks at the positives they might bring to healthcare changes but doesn't delve into the revenue generating aspect of their projects in her article. I should note Ms. Fox regularly examines the tough questions that I am raising here. My contrasting view to the glass that is half-full is also half-empty and I want to know more about the flip side of this story -when Google steps off the internet and into our personal health care.
I contacted both Google[x] and Biogen Idec for more information on their joint project, wanting to know how this data will be gathered and when will this begin, or if it already has. I heard back from agents of both companies, but I still know little more than from this vague response I received from Google [x] on January 29, which I was told I should quote attributable to Google:
“Biogen Idec joins forces with Google[x] Life Sciences to explore symptoms and progression of multiple sclerosis
Biogen Idec and Google[x] Life Sciences are joining forces to better define and understand multiple sclerosis (MS). The collaboration will combine Google’s emerging technologies such as novel sensor platforms, laboratory science and bio-analytical tools with Biogen Idec’s expertise in MS to explore one of the greatest challenges in managing the disease – understanding how and why the disease impacts each individual patient so differently.
Although there are several effective therapies to treat MS, it has remained difficult for researchers and physicians to truly understand what factors contribute to each individual patient’s disease presentation and progression. MS is characterized by a wide range of symptoms that can vary from patient to patient. Even within the same patient it can vary from day to day. And two patients with similar MS symptoms today could have very different lives in a few years, with one in a wheelchair and one playing daily games of tennis. Researchers have been eager to find new, more precise ways to understand how the disease affects individuals over time, but the information available to them has been limited to what’s gathered during office visits or via self-reporting.
Biogen Idec and Google[x] Life Sciences researchers will collaborate on prototypes of new tools and technologies that could be used by patients in clinical studies. The teams are particularly interested in finding ways to better predict patient outcomes. It’s possible, for example, that a patient’s immune system, or gait, or sleep patterns (or a variety of other subtle biological changes) are revealing subtle clues, but researchers haven’t had the tools to collect this information or study it for trends. The long-term hope is that more continuous, precise information about patients’ experience with MS may lead to new insights that make it easier for patients and doctors to successfully manage disease.”
I also heard from Dr. Rudick, Biogen Idec’s Vice President, Development Sciences and Director, Value Based Medicine MS Innovation Hub; he was quoted in the brief information in the Bloomberg Business story. We had several email exchanges about arranging an opportunity for me to learn more about this program and another ambitious initiative they have begun that will also be gathering clinical data from people with MS. I hoped that discussion might happen and it did, after a six week wait.
During that wait, I read a startling statistic that might tie back into this type of partnership – the high percentage of wearable and trackable device apps that feed our data to commercial entities. This would include fitness trackers and the mobile apps many of us have on our cell phones. I recently loaded the free app MySidekick™, offered by Biogen Idec, onto my iPhone without thinking of its ability to track my every move or the value of my data about items such as mood, activity and questions for my doctors. Perhaps this partnership of Google[x] and Biogen Idec is just an extension of this commercialization of our data. This makes me think many people using these apps and trackers are not aware that their data is being fed to companies who in turn share the data they gather from us, to make money from other sources or to further develop their own profitable healthcare products.
These are the additional questions I submitted to the Google[x] press office this week, since they indicated I should feel free to contact them for additional information:
Can you provide more information on the purpose of Google[x] Life Sciences and how Google's mastery of technology interfaces with pharmaceutical research?
Is the work of Google[x] Life Sciences subject to continuous IRB review before engaging with patient data and patients themselves? In this project with Biogen Idec, will their IRB procedures be followed or will they default to those of Google [x].
What ground rules have been established for the use of patient data, especially what is gathered through wearable technology, to be sure that the Common Rule of patient protection and informed consent is honored?
How did this partnership evolve? Did Google[x] Life Sciences think of the project or were you approached by Biogen Idec to develop this partnership?
Does this look at MS patient outcomes include the use of information that is exchanged on patient-to-patient forums and other online discussions? Will data mining be one of the sources used to look at patterns of MS?
What expectations do the people at Google [x] have on the return for their time and investment into multiple sclerosis?
Will the information gathered through this project be available as open source for all MS researchers to use or will it be proprietary to Biogen Idec?
If you are directly recruiting patients to participate in this study, how will that be done and what forms of technology, support and compensation might those subject be able to anticipate? "
I submitted the same list of questions to Biogen Idec for answers from their perspective, and spoke by phone with Kate Niazi-Sai, an Associate Director of Public Affairs for Biogen Idec. She was unable to discuss very little from my list of questions because she says they are ‘early on’ in the development of the project. She was able to tell me the idea of collaborating came during a casual discussion between the CEO’s of Google and Biogen Idec. Can you imagine what type of cocktail party conversation that might have been?
The plan, which has not yet been developed according to Ms. Niazi-Sai, must involve three components she outlined
- It must be beneficial for people with MS
- It must follow all regulatory policy and
- It must be ethical
When asked about the use of apps and wearables as part of this project, she said they will be incorporated, especially because of the advancement of analytics software to compare data. We discussed the use of wearables to track the activities of people and report them back to the company that sponsored the app behind the equipment. I asked if that is what they are doing with Biogen Idec’s free app, MySidekick™, because it is asking the user to enter their mood, activities, sensations, as well as questions they want to ask their doctor. There is even a medication reminder function that we can enter our list of medicines and when we take them. All of this is valuable information to a person with a chronic disease like MS, but also of great interest to companies developing the medicines to treat that disease. The app comes with a lot of consent language to agree to before it is fully optional on my smart phone, much of which was unclear to me what it really meant. Ms. Naizi-Sai said she was not familiar with MySidekick™, and they are a large company with many projects; her reply caught me by surprise because I would think the Value Based Medicine division of Biogen that is developing apps and other technology pieces, would know what else their own company is using in the market.
Biogen Idec researchers in this same Value Based Medicine Innovation Hub are working on another project for developing a portal for a Learning Healthcare System in conjunction with Siemens, one of the world’s largest manufacturers of imaging equipment. They stop just short of calling it a study because that would involve the introduction of regulatory oversight, and are instead focusing on the continuous learning system concept. Again, that’s a topic for another time. Ms. Niazi-Sai said the real world data gathered by this project will eventually fit together with the project with Google. However, she was unable to provide details of what this might look like since it is also ‘early on.’
The project with Siemens involves a few select MS Centers, including Johns Hopkins, that will be used to develop a portal where physicians will enter patient data, including clinical notes, MRIs and patient reported outcomes (PROs) over a long period of time to track the progression of MS and try to understand why some people do fine while others ultimately have a horrible end to their MS. It will also include the collection of biological samples. She said this will be different than clinical trials because those are restrictive and place “challenges of gathering real world observations” on trials getting answers. I know from direct conversation with a leader in the Johns Hopkins healthcare system that Biogen Idec and Siemens are already talking to personnel in the Johns Hopkins MS clinic, and are in the process of working through the details of it being one of their sites, if it hasn’t already been finalized by now with a lucrative contract. It’s puzzling to me how an institution with Johns Hopkins’ stellar reputation could be recruited to participate in something that hasn’t yet been formed, shaped or begun and is ‘early on.’ I would think their leaders would require more details before agreeing to this project.
I asked about a timeline for these projects and Ms. Naizi-Sai says all she knows for now is it will be sometime this year and it is too soon to know exactly when. Again, I am puzzled because even with the tremendous resources of Biogen Idec, Google[x] and Siemens, I would think it might take more than a few months to move this project from ‘early on’ to operational.
The inclusion of members of the MS community to help develop and oversee these projects is important to me and she said they plan to approach this holistically, but could not explain right now how people with MS might be included. Consulting my other good online reference friend, Miriam Webster, in this sense they are not talking health food, but the ‘complete system rather than the individual parts.’ Where consultation with people living with MS who might benefit from this project fit into this system is still undefined.
Ms. Naizi-Sai asked if I would like her to arrange a time for me to speak with Dr. Rudick, but she also indicated he would have nothing additional to add to this story at this time than what she had already shared since it is still early on. I suggested we wait until there are more details that can be shared and asked her to update me on both of these projects when possible.
Toward the end of our talk I asked why this news and other similar types of advanced projects at Biogen Idec have begun in the Bloomberg News, an online financial service meant for investors, but are not being talked about in MS publications. She said that is because the Bloomberg reporter asked the questions, which made me wonder aloud to her how the reporter knew what questions to ask. I note again, in full disclosure, that I receive this financial news because I invested in MS pharmaceutical companies stock shortly after I was diagnosed. I have also disclosed on numerous occasions that I have sat on consumer advisory panels for their company. To add to my relationship with Biogen Idec, I have been on their infusion drug, Tysabri, for over three years, and am satisfied with the treatment and my MS is fairly stable. I have many reasons for wanting to see these projects be successful, but they must follow those three principles Ms. Naizi-Sai began our conversation with
- It must be beneficial for people with MS
- It must follow all regulatory policy and
- It must be ethical
Partnering Dr. Google and Siemens with MS drug companies such as Biogen Idec might be a good idea, but it gives me pause with all the other possibilities of how they have constructed the ability to inject themselves into a position to gather my clinical data, particularly information I have shared with my medical providers, thinking it would remain confidential. I want to know more. I think you will want to know more, too, before allowing Siemens access to all of your data, and signing up for round-the-clock monitoring by Biogen Idec or Google.
Wishing you well,
Do you celebrate your MS Anniversary?