The Trouble With "Traditional" Research and a Call to Action

What’s wrong with the following picture?

Two medical researchers at a major academic center collaborate to study disease X. They come up with the research question, design the project, obtain grants, and collect data. Their results are published in a scientific journal and presented at several medical conferences. Based on this first study, the researchers start another cycle of idea generation, data generation, and publication.

I presented this scenario to three Harvard medical students working with me in the ER. They all looked at me blankly. “I don’t get it,” one of them said. “Isn’t this the way research is done?”

That’s exactly the problem. This is “traditional” research, and traditional research leaves out one critical stakeholder: the patient. 

A few weeks ago, I had the honor of participating as a member of PCORI’s inaugural advisory panel on patient engagement. PCORI is the Patient-Centered Outcomes Research Institute, and is a new federal institute mandated to figure out how to meaningfully involve patients in research.

Some may argue with the necessity of such an institute. After all, isn’t research ultimately done to help patients? While grants and publications advance careers, few researchers go into such grueling fields to make money or gain fame. Isn’t research already serving the public good, which by definition is patient-centered?

But here’s another way to think about it. In “traditional” research, patients are subjects. Their sole purpose is to participate in research trials, and the extent of their decision-making is confined to whether to participate in the trial (let’s set aside, for now, the many throughout history who were subject to research against their will). Very rarely, if ever, do patients participate in the research design, data analysis, or result dissemination. Very rarely, if ever, do patients initiate the research and envision the research question itself.

Yet isn’t it the patient—the one with the disease—the most knowledgeable about what needs to be studied and how? No doubt, the researcher has irreplaceable expertise; but isn’t the patient also a vital partner in the process?

In this era of healthcare reform where the patient is finally recognized as a necessary stakeholder, the creation of PCORI is an attempt to shift the paradigm of how medical research is done. Rather than having patients as invisible, nameless subjects, PCORI requires them to be involved in the research design from the very beginning. Patients are expected to be equal partners in deciding what projects to fund and figuring out how to design studies with a patient-centered focus. They are expected to help figure out what’s important to study, and how to get out the results beyond the realms of scientific meetings and medical journals.

Much about this “new” concept of medical research is common sense. Most would agree that precious time and tax dollars should be devoted to what really matters to people. Yet, this paradigm shift is such a departure from traditional research that it is not without its doubters. Researchers not used to involving patients question whether they would be sophisticated enough to understand the research process. Patients, too, doubt whether they have the expertise required. Fueling this is mutual mistrust: will this new patient-centered approach derail existing research? Will patients end up being “used” for some nefarious ulterior motive?

As part of PCORI’s outreach efforts, it solicited applications for 4 advisory panels. Over 1,000 people applied—many of whom are representatives of patients and patient groups. Twenty-one of us were selected for the advisory panel on patient engagement, and met over two days in Washington D.C.

While many of us are optimistic and excited about the potential of PCORI, we also raised several questions, including:  

* How can researchers switch their mentality to become patient-centered such that they are not just simply checking a box to affirm that yes, patients are involved?

* How can PCORI itself ensure that it adheres to its goal of “research done differently” and go really tackle the concept of patient-centeredness?

* While it is admirable that PCORI has taken great strides to involve many patient advocacy groups, these groups represent only a small portion of patients. How can PCORI go beyond hearing the loudest voices—many of whom may also have their own motives—and really engage people?

* How will PCORI address issues neglected in traditional research that are vital to our healthcare, such as preventive medicine?

* How will PCORI really engage people around the country to come up with research questions and redirect priorities?

Recognizing that there is a fundamental problem with the traditional conduct of research is a critical first step to making change. PCORI has opened a door that’s been shut for far too long. It is now up to all of us—as physicians, researcher, and most of all, as patients—to ensure that medical research, and medical care, focuses on and originates from the patient.

For Students and Residents: a Guide to International Emergency Medicine

International emergency medicine (IEM) is one of the most popular subspecialties in emergency medicine. Among other medical specialties, international medicine is just as popular. As a senior resident, I have seen many a medical student or junior resident light up when I discuss IEM. But even though IEM is a great buzzword, it can mean different things to different people. Does it refer to a clinical rotation to see how EM is practiced in other parts of the world? How about developing emergency systems, or providing humanitarian relief? Where does research or teaching fit in? In my first president's column, I want to share my passion for IEM with you by providing some guidance and advice that I wish I had gotten when I was first drawn into IEM.

Unlike some of my IEM colleagues who were born to do international work, I had my heart set on a career in domestic health policy. It wasn't until medical school that I was exposed to international health. A fellowship at the WHO made it clear that the issues I was working on in the U.S. were magnified many times over in other countries. Geneva was an eye-opener, but I felt a need to work "on the ground", so went to Rwanda to do fieldwork on gender-based violence and subsequently to the Democratic Republic of the Congo and Burundi as a journalist reporting on war and health.¹ Through this exposure I saw the urgent need for research to understand systems and evaluate interventions, and decided to go to the U.K. for two years to study economics and policy. I came into residency with more tools and a stronger passion for IEM research. Now, entering my fourth year, I have conducted systems design and evaluations in several countries,^2-4 a healthcare workforce evaluation in South Africa,^5-7 and a global health professional study.⁸

Everyone’s path in IEM is different, and I share my background with you so that you can see my circuitous path in this journey. Students and residents often ask about getting involved with IEM and what things they should consider in building an IEM career. Here are some thoughts:

1) The only way to know whether or not you will like something is to try it. If you are new to international work, find an opportunity and jump on it. Don't be picky about location or type of experience. Many schools and residencies will have an international rotation. Most likely it is a one-month clinical experience, but occasionally it is a research project (e.g.,  studying malnutrition) or an educational opportunity (e.g., teaching point-of-care ultrasound). There may be a relief mission that needs your help. Some of my residency classmates went to assist with the disasters in Haiti and Japan. These were not things that they planned, but they jumped on opportunities that came up. Explore multiple options. Your own program is the most natural place to start, but also look elsewhere in your university. The American Medical Student Association has medical student elective listings. AAEM/RSA is also establishing an international rotation database. Keep your eyes and ears open and ask other residents and attendings to be on the lookout for you.

2) There has been a lot written in recent years about "medical tourism".^9,10 While this phrase conjures up unpleasant connotations, and sustainability in international programs is very important to think about, don't discount experiences because of your own (unnecessary) guilt. International rotations are important for your exposure, and whether you end up doing international work or not in your career, your experience will be instructive for you and good for your future patients. Find your own way to meaningfully learn and to contribute.

3) Once you’ve had experience with IEM, decide whether it is something that you feel passion for versus something that you would like to do only occasionally. There is no right or wrong answer--don't feel guilty if your experience showed you that you don't want to live in war-torn countries forever. Be honest about what you like doing and how you think international work will fit into your career. What attracts you most about the work? Does clinical work excite you while research bores you? Are you happiest doing impact evaluations from the comfort of your own home? Would you want to do these things occasionally, or do you love them so much that you need to build it into your career?

4) Consider the other interests that you have to balance. International fieldwork is hard to find time for in residency, but it might be even more challenging with a young family. Know how your significant other feels about your work. This is a continuing conversation for me and my husband, a South African native who I met in the U.K. Initially, we thought that we would spend two months every year abroad, but this is difficult to manage in both of our careers right now. It took me a while to realize that not everything I want has to be done at this very moment. Perhaps this is the time to focus on your family and your clinical work. IEM opportunities will be there when your life settles down. Perhaps later on, you and your family might consider a year or two abroad, or you may be able to take a job with greater travel flexibility. Think about how you want to balance your IEM interest at this point in time and be flexible to change.

5) Don't discount related work in the U.S. I have come full circle in this regard by starting in domestic health policy, falling in love with IEM, then coming back to U.S. policy. There are huge problems with access to care and health inequities in the U.S., and what you learn through your international experiences will inform your work here - whether it's in policy, advocacy, community activism, or your clinical work. Many international interests can be built into your domestic work and vice versa. If you have an interest in EMS, you can develop your expertise in the U.S. first and then do projects abroad. If you have experience with teaching mid-level providers internationally, you can design similar programs in the U.S. The options are limitless!

6) Build and nourish your network. Identify mentors as early as possible. Seek out those you admire and follow their career paths. Read their work. Ask for advice from those who have IEM careers and those who don't--their perspectives will be just as important for you. Women, it may help to find identify female mentors as women face a unique set of challenges. The Academy of Womenin Academic Emergency Medicine is a great resource, and this year it is offering free membership to residents.¹¹ Along the same lines, build your peer group. IEM is a small world, and your peers will encourage and inspire you throughout your professional lifetime.^8,12

As my mentors have taught me, a successful IEM career necessitates thinking outside the box—and keeping an open mind and open eyes and ears. Speaking of being open, now is the perfect time to get involved! Don't discount any opportunities. Now is the time to make a difference, in the U.S. and internationally, with our profession and most importantly with our patients.

References:

1. The New York Times. Two For the Road Blog. Available at http://twofortheroad.nytimes.com. Accessed 1 June 2012.

2. Wen LS, Oshiomogho JI, Eluwa GI et al. Characteristics and capabilities of emergency departments in Abuja, Nigeria. Emerg Med J. 2011; Nov 2. [Epub ahead of print]

3. Wen LS, Anderson PD, Stagelund S et al. National survey of emergency departments in Denmark. European Journal of Emergency Medicine. 2012; in press.

4. Wen LS, Char DM. Existing infrastructure for the delivery of emergency care in post-conflict Rwanda: an initial descriptive study. Af J Emerg Med. 2011; 18(8): 868-71.

5. Wen LS, Geduld HI, Nagurney JT et al. Perceptions of Graduates from Africa’s First Emergency Medicine Training Program. CJEM. 2012; 14(2): 97-105.

6. Wen LS, Nagurney JT, Geduld HI et al. Procedure competence versus number performed: a survey of graduate emergency specialists in a developing country. Emerg Med J. 2011; Oct 21. [Epub ahead of print]

7. Wen LS, Geduld HI, Nagurney JT et al. Africa’s first emergency medicine training program at the University of Cape Town/Stellenbosch University: history, progress, and lessons learned. Acad Emerg Med. 2011; 18(8):868-71.

8. Wen LS, Greysen SR, Keszthelyi D et al. Social accountability in health professional education. Lancet. 2011; 378(9807): e12-13.

9. Jesus JE. Ethical challenges and considerations of short-term international medical initiatives: an excursion to Ghana as a case study. Ann Emerg Med. 2010;55: 17-22.

10. Van Hoving DJ, Wallis LA, Docrat F et al. Haiti disaster tourism—a medical shame. Prehosp Disaster Med. 2010;25: 201-2.

11. Society of Academic Emergency Medicine. Academy of Women in Academic Emergency Medicine. Available at: http://www.saem.org/academy-women-academic-emergency-medicine. Accessed 1 June 2012.

12. Morton MJ, Vu A. International emergency medicine and global health: training and career paths for emergency medicine residents. Ann Emerg Med. 2011;57: 520-5.

Portions of the article will appear as part of the American Academy of Emergency Medicine's Common Sense magazine. I serve as the President of AAEM/RSA. These opinions represent my own and not of AAEM or AAEM/RSA.