HIStalk Interviews Abdul Shaikh, Program Director, National Cancer Institute

Abdul R. Shaikh PhD, MHSc is program director and behavioral scientist, Health Communication and Informatics Research Branch, with National Cancer Institute of Bethesda, MD. He is involved with the federal government’s Informatics for Consumer Health site.

Give me a brief overview about yourself and about Informatics for Consumer Health.

I’m based within the Division of Cancer Control and Population Sciences. This is one of five divisions at NCI. Our focus is primarily on looking at preventative measures for cancer as well as controlling cancer once someone is diagnosed with it, and then throughout the cancer continuum to survivorship and palliative care as well.

I work in a really diverse division here, but we have folks who have training similar to mine. I’m a behavioral scientist, but we also have scientists who are biostatisticians, who are clinical epidemiologists, who are former MDs who are now here doing research. It’s a really broad range of public and allied health sciences. Our common mission is to prevent and control cancer.

Drilling further down from the division level to the program and branch level – which is where I am based – I’m in the health communication and informatics research branch. Our primary mission here is to look at the processes and effects of communicating information related to cancer and other diseases. That involves different modalities, including interpersonal, mass media, print communication, and also of course technology and new informatics platforms.

Where I come into the picture is I really combine a passion for behavioral science and communication science with a real affinity for technology. I’ve always been a bit of a computer geek. I’ve found that in this branch I’ve been able to marry those two passions quite nicely.

What I’ve been leading here in the program in the division are few efforts. One of them is this broad notion of cyber infrastructure for population health. In the last year, I co-edited a special issue in the American Journal of Preventive Medicine, which has a number of great articles written by readers in the field looking at various issues around why we really need to start working hand in hand with folks who understand technology, who understand clinical health, consumer health, and research. It’s really to address tough challenges, such as cancer prevention and control.

Another area where I’ve been leading our efforts in the division is in this emerging area of open innovation. It comes out of the White House’s Open Government directive for increasing transparency and participation and collaboration. Out of the open government directive came the Health Data Initiative, which is when HHS and the Institute of Medicine launched this national initiative to help consumers and communities get more value out of the wealth of data that we have. Again, dealing with this big data problem.

What the reauthorization of the America COMPETES Act did in 2009 was to give us the authority in the federal government to run these challenge competitions, to try to harness innovative ideas in ways that we haven’t before. I think NASA has been one of the frontrunners on the federal end in utilizing these challenge mechanisms before America COMPETES.

This led to was two innovation challenges. I led a team of folks here and in partnership with a number of groups in academia and with the Office of the National Coordinator to put out this public call to the innovators to work with our data that’s available to develop cancer prevention and control applications.

We let the problems stay very broad, but I’m really proud to say that the winners have been successful in terms of addressing the challenge of creating applications that can help consumers advance their health and cancer control. An example would be an application that came out of Vanderbilt by Dr. Mia Levy and her team. They developed this online Web portal that provides clinicians with personalized genetic treatment information for cancers. As you might know, this is a very hot area of research. It’s very labor intensive for a clinician, let alone a researcher to stay on top of what are the best genetically influenced treatments. By creating this portal, Dr. Levy has tried to use technology to address the challenge of these types of treatments and disseminating them.

I just learned last week that Dr. Levy’s team won GE’s recent cancer data challenge. They got a $100,000 from GE and they’re getting support to further develop this application maybe to integrate it into existing EHR platforms to provide decision support. That validated for us the notion of these innovation challenges as one way to get more innovative ideas out into practice.

The open data projects are relevant to us providers, who have all of this data locked away in our individual EHR systems. Kaiser and Geisinger come to mind as doing interesting things with that information. How do you see those rich sets of clinical data that span years tying in with the broader public health efforts from the government’s side?

That’s a great question. That’s something that I think about a lot and folks here that I work with in HHS think about a lot.

From our perspective, because our mission at NCI is so much focused on advancing the research agenda for cancer prevention and control, we have been funding a lot of innovative science around using new technologies for decision support, for clinicians, for consumers, as well as for conveying complex data and information. Really a lot of things that could be relevant right now for health impact. The problem, as you recognized, is that whole bench-to-bedside or bench-to-trench gap that we’ve seen over multiple decades.

One way that we’re trying to address that — and to use this new zeitgeist that has embodied by notions of opening up data, transparency, and innovation — is that I’ve been working on developing a new small business innovation research grant. This is the mechanism that we have across the federal government. Essentially, the goal of this funding mechanism is to commercialize science. What it does for us is that it’s a vehicle to get these new innovations like Dr. Levy’s team and others have created, give them money. It could be up to $1.15 million for a Phase II SBIR in two or three years.

What they need to do is further develop their technology or application and then they need to evaluate it, because we want to know, “OK, this is a great idea, they’re using evidence, but does it actually work? Does it help patients? Does it clinicians? Does it lead to better outcomes?”

That’s what that money provides them. It also provides them with the support to then commercialize that application and reach out to larger entities. That’s what we’re working on now in terms of tying these innovation challenges to a more meaty resource mechanism to give funding to innovators to translate to science. The key here is we’re really trying to say, “How can we translate our science for impact in multiple settings — clinics, communities, consumers, and so on?”

Most of the money spent on healthcare technology is episodic systems that try to make providers more efficient. Nobody’s made a business case for public health. Hospitals and physician offices aren’t too interested in patients once they’ve gone out their doors until they come back again, except possibly some of the ACOs that are forming. How do you develop an awareness and an appreciation for public health informatics when there’s no money to be made in it?

That’s another thing that I think folks with my training and background think about. I trained in the school of public health. That’s where I did my doctorate and my master’s. I think that what’s really interesting to see now with the recent legislation such as the HITECH Act and Affordable Care is that we’re realigning incentives for payment of medical services that are tied to population health outcomes. Capitated outcomes is another way to put it.

An example would be looking at how reimbursement for prescribing medicines through electronic means is one way to start moving the needle and get clinicians to think about using technology for broader outcomes. If you look at the recently released Meaningful Use indicators, the Office of the National Coordinator for Health IT is really trying to push the needle on incentivizing systems and clinicians to look at broader outcomes for public health. I think that’s the goal with that whole initiative.

On our end at NCI, we do have research that shows that if you do focus on outcomes that are related to prevention, to smoking cessation, to improving nutrition and physical activity, these do lead to not just better health outcomes, but also to cost savings. We have that data and we have that research.

The Informatics for Consumer Health initiative was one way that we saw in NCI of getting together with important stakeholders in government. We launched this back in 2009. We had a summit with partners at CDC, NLM, ONC, NIST, NSF and AHRQ, as well as a number of stakeholders across the commercial, the health system, education, research, and advocacy sectors. The whole point of this was, “Let’s get together to talk about how we can help consumers get mastery over their own health through technology.” Part of that is what happens in clinical settings. That was back in 2009, but it’s been nice to know that there have been a number of outcomes coming out of that summit.

One is this Web portal — which is just focused on providing funding opportunities, the latest publications and research, opportunities for cross-sector collaboration, as well as informative blogs on topics related to consumer health and health informatics — to address that translation science question that we’re always thinking about. The journal that I mentioned, the special issue of the American Journal of Preventive Medicine that came out last year, was another way and another offshoot of that summit as a way to focus on these challenges.

Is part of the challenge that most of the actions that could save healthcare dollars and improve outcomes involve prevention rather than treatment? Do you think the data and apps the government has can get consumers engaged enough to take that self-responsibility to improve their own health?

I’m constantly amazed by the ingenuity and the innovation that comes out of folks that we don’t normally interact with. By “we,” I mean the normal constituents for NIH are the scientific community – academia, the cancer scientists – that are doing a heck of a job addressing cancer research and then the agenda for cancer prevention and control in our case.

But I think what these innovation mechanisms do is they’ve allowed us … we’ve seen this now running two challenges with a really small resource footprint. Our first challenge didn’t have any monetary prize. Our second challenge gave out prizes of $10,000 to $20,000 What we’ve found is that it allows for innovators out there to work with health data to address tough challenges like cancer prevention and control.

I think that what we need to do here at NIH is figure out how can we support these seeded innovation efforts with more substantial resources to then evaluate these innovations. A recent study at GW here looked at the smoking cessation apps on the iPhone. It found that almost all of them aren’t using the evidence-based guidelines that can help people quit smoking. If we can get more of these application developers to use the knowledge we already have in the development of their apps, that will lead, hopefully, to greater potential for change, for greater improvements in health-related behaviors which will lead to better public health outcomes.

My audience is primarily involved with acute care IT and care delivery. How would you like to see them get more involved in what you do?

There’s a large summit that’s going to be held here in June. It’s a follow up to the Health Data Initiative events of last year and the year before. I believe if you Google Health Data Initiative and HHS, you should find that information about it. This is a summit that is convening leaders in government, leaders in IT, and in healthcare to talk about these issues of how we can harness data, how we can use and harness innovative ideas to then advance the needle on public health and on real tough health issues. I think that’s one way where your readership can really start looking at, “OK, what is going on with innovation, with data in health and IT, and how can we get involved?” Because we’ve seen, for instance, with the Blue Button initiative, that there’s a potential for it to be a way to open up some data and allow patients to then share that data and pass it on to innovators to use to potentially improve their health.

I think these are baby steps, but they’re all going in the right direction, which is, let’s see what we can do by harnessing innovation and technology and data, because we are in a very data-intensive environment right now in health.

We’re collaborating in various capacities with federal partners including ONC, AHRQ, and NIST to address challenges such as patient engagement, communication, and care coordination for cancer patients and providers. As you recognize, the restructuring of our health services environment from the evolution of health IT and policy initiatives is creating new decisional architectures for cancer treatment and care planning that have the important implications for patient-centered communication and decision support – key aspects of our division’s research priorities.

For instance, there are many research questions on how health IT such as EHRs, PHRs, and mobile devices can be leveraged to engage, activate, and help patients and the care team communicate and coordinate care – from diagnosis, through treatment, and end of treatment transitions into survivorship / palliative care.  In addition, building on a recent NCI monograph on patient-centered communication, how can health IT be used to provide patients with ongoing support for the core functions of patient-centered communication: facilitating information exchange, making informed decisions, facilitating emotional coping, enabling self-management including navigation and coordination, managing uncertainty, and fostering ongoing healing relationships between patients / families and clinical teams.

Research questions such as these build on the key themes of translational science and use-inspired research that in my mind are necessary when thinking about the transformative potential of health IT for cancer and other diseases.