(Note: I wrote this paper as part of a grad school application in November, 2016.)
In their interactions with the medical and scientific research community, the traditional role of patients has been that of “passive research subject.” However, a complex interplay of changing social, political, economic, and technological dynamics is fundamentally upending the process of medical research and redefining the ways in which patients are involved with that research. The Internet, especially, has had a profound influence by contributing to the democratization of medical information and by enabling unprecedented social connectivity. These trends, along with changing cultural attitudes, have helped to shape a patient empowerment movement which is not only affecting micro level doctor-patient relationships, but is also expanding the patient role in the health care system as a whole. Medical research has typically been done “to”, “about”, or “for” patients, but increasingly, it is also being done “with” and “by” them.
In her 2015 blog post, “The Power of Connection,” Susannah Fox (Chief Technology Officer of the U.S. Department of Health and Human Services) juxtaposes today’s environment with the reality that existed only a few short years ago: “One of my favorite stories is set in 1994, when a man actually had to impersonate his doctor to gain access to a medical journal article about a surgical procedure he was being urged to consider.” This story may seem archaic to modern patients who are accustomed to being active and informed participants in their own medical care, but it was not long ago that the culture of medical paternalism was the norm. Doctors were like kings, presumed to know best, the gatekeepers of medical knowledge, and the final authority regarding medical care decisions; patients were often not consulted about their medical care preferences, and were sometimes patronized and even lied to.
Patients today have significant access to medical information that can be read in order to learn more about personal health issues, and some patients have started to take things a step further by actually using that literature to make meaningful contributions to the advancement of medical research and knowledge. Consider, for example, the remarkable story of muscular dystrophy patient Jill Viles who wrote to French molecular biologist Etienne Lefai and suggested that the biological mechanism of her disease might involve the interaction of protein SREBP1 with the lamin gene, a possibility that changed the course of the scientist’s research and might eventually lead to new treatments. In addition, although facing some initial resistance and skepticism from medical professionals, Jill was able to correctly determine medical conditions in three different people including Olympic medalist Serena Williams with lipodystrophy, which helped to quell steroid rumors and likely prevented a pancreatitis attack.
There are also dangers and negative ramifications associated with the disruption in the flow of medical information: the spread of unsubstantiated medical claims and falsehoods, increased physician frustration and wasted medical resources from the time and effort spent trying to correct the beliefs of ill-informed patients, the worsening of patient anxiety and hypochondria, and direct patient harm and even death (from, for example, following lay advice rather than expert medical advice).
Physicians point to the anti-vaccine movement to illustrate the dangers of the Internet. In a “Science Based Medicine” blog post, Dr. David Gorski explains that “It is here that the Dunning-Kruger effect comes to the fore, wherein antivaccine activists think that they understand as much or more than actual scientists because of their education and self-taught Google University courses.” Much of the anti-vaccine movement started based on a published study that was later retracted and, although there is now broad scientific consensus that the benefits of vaccines far outweigh any potential harms for most patients, it is extremely difficult to convince many parents of this fact. A study conducted by political science professor Brendan Nyhan and a team of pediatricians concluded that a variety of pro-vaccination campaign approaches (using science, emotions, facts, or stories) all failed to increase intent to vaccinate among parents.
Sometimes people intentionally spread lies on the Internet. Such was the case with Belle Gibson, an Australian woman with hundreds of thousands of social media followers, who convinced many that she was able to beat cancer through diet and healthy living, when in fact, she never had cancer.
Members of the public frequently lack the training and expertise necessary to distinguish factually-based information on the Internet from information that is clearly false, including information spread by people having a commercial interest or ideological agenda. Patients who have medical research ideas also run into this same issue of lacking sufficient expertise as is cogently explained by “Food Allergy Support (FAS)” member CMdeux:
The problem is that without the background to determine whether or not ideas (whether our own or those that we find appealing when promoted by others) are even plausible, we can get into the weeds pretty quickly. It takes a VERY intelligent and secure clinician/researcher to actually explain why something is wrong/impossible/implausible, however, and that is time that (mostly) is better spent on doing research or doctoring-- because there are just not enough of those people in the world. Unfortunately, that leaves a gap which is easily filled in the modern era-- filled with pseudoscience and fear-mongering.
Scientific expertise can be considered a limited resource that is not predominantly under the control of patients. The typical patient also generally lacks access to other resources such as large amounts of money, institutional labs, and health record data.
The limited resource barrier to greater patient involvement in research can be reduced through innovative and collaborative research partnerships between patients and experts. For example, the C3N program (created to improve the medical care for kids with chronic diseases) at Cincinnati Children’s Hospital Medical Center “designs, tests, pilots, and implements innovative ideas” and its leadership includes “patients, clinicians and researchers working together as co-designers.” The Food and Drug Administration (FDA) is also considering strategies to better include the patient voice “during the medical product development process and ways to consider patients’ perspectives during regulatory discussions.” The Metastatic Breast Cancer Project, headed by Dr. Nikhil Wagle of the Dana-Farber Cancer Institute, “cuts against the grain of a medical system that was not designed to learn from patients” and it includes patients in its decision-making processes. Clinical trials that are funded by the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit group, are required to “include patients in trial design and other aspects of the process.” Finally, in a BMJ blog post, Amy Price writes about how Dr. Paul Wicks (of Patients Like Me) saw “patients doing research, collecting data, and then being taken over or managed by a recognised research body for the findings to be properly validated and respected.”
Peer review and post-publication review are critical aspects of the research process. Patients have typically been excluded from participating in literature review, but The BMJ has instituted a bold new “patient review” initiative that they hope other publishers will eventually follow. Patients and caregivers are being asked to comment on issues such as the following: the importance and relevance of the research to patients, the types of challenges that treatment or intervention recommendations might face if implementation is attempted in the real world, and whether they have suggestions for improving the research.
The potential exists for the concept of “patient review” to be expanded in the future. For instance, with patients increasingly reading medical literature themselves, they may recognize situations where the research does not match with their experience. While such anecdotal patient information has to be treated with caution as it is often unreliable,anecdotes can be written up as case reports and they can also point the way to future areas of medical research and discovery. Social media further increases the likelihood that discrepancies between the medical literature and actual patient experiences will be identified. Patient-reported outcomes (PRO) can also similarly be used to improve medical research. Patients are often ignored when they report symptoms or experiences that do not fit into professionally accepted disease definitions or other related medical models such as those used to record drug side effects. For example, the concerns of patients reporting an “electric head feeling” while taking serotonin reuptake inhibitors were ignored for years. Medical practice and research can be improved by better incorporating patient experiences.
It is important to take a step back in order to better appreciate the fundamentals of why patient involvement in medical research is essential. An excellent overview can be found in the article “Six ‘biases’ against patients and carers in evidence-based medicine”:
Evidence generated by clinical research will depend on who asks the questions, who defines the outcome measures, who interprets the findings, and who disseminates the outputs. In the past few years, many research funders have encouraged patient input to each of these steps. However, it will be decades before this laudable stance achieves the necessary change in the knowledge base so that it truly reflects patients’ priorities and needs. Most studies underpinning today’s evidence-based decisions were designed in an era when researchers were assumed to know better than patients which interventions should be compared, which outcomes should be measured (and when), what the data meant, and who should be informed of the results.
Especially with regards to publicly funded research, a commitment to fairness and to democratic principles such as representation makes it imperative that the desires and interests of patients are considered throughout the research process.
Patient involvement in medical research improves the quality of the research. This is eloquently explained by Professor Dame Sally Davies, who is a Chief Medical Officer (CMO) in the United Kingdom:
No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.
Researchers and patients have different perspectives, different biases, different experiences, and often, different priorities. Although they may not be as highly educated or possess as much medical knowledge, patients can often see faulty assumptions and research discrepancies that the experts cannot. FAS forum member CMdeux argues that diversity is, in fact, an essential part of the scientific process:
Science is all about second, third, fourth, and fifth opinions. Evidence-based medicine needs to be, too, if it seeks better truth with greater efficiency. That's where I think that most medical practice still errs. It hopes for fewer human beings to be involved in the interests of "efficiency." Hubris, that. Science is the most efficient truth-seeking mechanism that human beings have ever devised. And it REQUIRES multiple participants, because each of them comes at a problem with different biases, previous experience, etc. You can't skip that step and have it work. The best clinicians realize this, if only intuitively-- and INVITE collaboration with patients and families and other practitioners.
In that same post, CMdeux explains how the culture of science (questioning, challenging, accepting uncertainty) is, in many ways, the “exact juxtaposition” of a medical culture that encourages deference to authority and expects physicians to be “Always Right” with their patients. Physicians often get annoyed, frustrated, and even angry with empowered patients (especially the Medical-Googler variety), who they view as challenging their authority and wasting their time. This presents a problem as it is precisely this type of patient who often would like to take a more active role in medical research.
Medical culture is very difficult for outsiders to understand and medical professionals hide many aspects of it from patients. For instance, much of the public would probably be shocked if they heard the contemptuous argot that many physicians use to describe patients. In fact, the state of current doctor-patient relationships has been described as corrosive. Many physicians are stressed, demoralized, and lack the time to properly care for patients. Trust, respect, empathy, time, and a willingness to openly and honestly communicate are all necessary if clinical researchers and patients want to successfully collaborate on medical research.
The reality is, though, that not everybody in the research community supports expanding roles for patients in medical research. They would prefer that patients engage with them in more traditional ways: participating as subjects in clinical trials, sharing their health data with researchers, engaging in research fundraising and public relations efforts, and perhaps by sharing patient stories that make people feel good or demonstrate why further research is needed. They are not, however, interested in sharing power or control over key research decisions with patients. The ideas, opinions, and preferences of patients are not valued and are not considered worthy of their time or attention. Dave deBronkart, also known as e-Patient Dave, has compared the patient empowerment movement with other cultural revolutions such as the women’s movement.
Even when people or organizations claim to value patient involvement in medical research, the commitment to genuine and meaningful engagement is not always sincere. Sometimes agreeable patients are being used to further the interests of those with power. Sometimes the reason might be impression management: it looks good for a researcher or organization to appear supportive of patient empowerment trends. At other times, an organization may be trying to gain legitimacy; for instance, the intentions of a “patient advocacy” group run solely by doctors, scientists, and pharmaceutical company representatives might seem suspect.
In their paper, “From tokenism to empowerment: progressing patient and public involvement in healthcare improvement”, Josephine Ocloo and Rachel Matthews explain that professionals often dominate the patient involvement process, controlling which patients get to participate and in what ways. Power imbalances keep many patient voices from being heard and limit the ability of patients to effect change.
In a Health News Review post, Trudy Lieberman exposes the manipulative actions of Astroturf groups that “gather ordinary citizens from the grassroots to advocate for various causes while in reality shilling for the trade associations, PR firms, corporations, and political organizations that set them up.” The normal, typical patient concerned about issues such as patient safety is often ignored by the powerful segments of society that control the research resources, whereas patients who are loyal to the agenda of special interest groups are given institutional support which allows their voices to be heard.
Breck Gamel is a parent advocate who was removed from the cystic fibrosis Patient Advisory Council at her son’s hospital. In a blog post, she questions whether it is “parents” and/or “clinicians” who get to define what is considered “constructive work.” She expresses the desire, shared by many patient advocates, to move beyond tokenism involvement to a true partnership in which power is shared:
I’m left to believe that I basically wouldn’t rubber stamp what the hospital wanted to do. I am of the opinion that the patient voice and patient experience is much more valuable than to just nod and smile. Patients want to do more than approve work that has already been done. We want to partner together to change and improve care.
Patients can form patient advocacy groups to increase their power in order to better get their needs met, but the paradox is that when such groups partner with researchers (for needed expertise and to have the patient organization viewed as legitimate/credible/trustworthy), the interests of the researchers often take precedence over the interests of the patients. Some “patient organizations” feel more like “doctor” or “pharmaceutical” organizations, where “meeting patient needs” is given a lot of lip service, but is actually a low organizational priority.
It might be disconcerting to some patients/caregivers to realize that their needs are not always the primary concern of those doing medical research. Patients want research that helps them live healthier and/or longer lives. Sometimes patients can be too emotionally invested or vulnerably desperate to objectively and rationally evaluate medical topics as science demands, but their intentions are generally aligned with good science: they want research that is accurate, efficient, and relevant.
Although there are many altruistic researchers working to benefit humanity, the self-interests of expert researchers (such as funding, publications, or income) influence much of their work. Joseph Hyder, professor of anesthesiology at the Mayo Clinic, goes as far as to say that “Most papers are generated for advancement of careers rather than advancement of human knowledge.”
The institutional pressure to “publish or perish” and to find funding greatly influences what is researched and how. Good scientific practices, such as publishing failed studies or sharing data, are often not followed. The integrity and quality of research can be affected by conflicts of interest. Scientists may be hesitant to point out the flaws in other’s research if they fear doing so could harm their career. A researcher may choose not to study a possible intervention that would benefit patients if that intervention is not profitable. Political and economic interests can affect the quality of scientific studies and cause public harm. There are also several egregious historical examples, such as the Tuskegee Study of untreated syphilis and the McGill “psychic driving” experiments, where researchers put their own interests ahead of patient interests.
Patients want research that benefits them and are starting to realize that they have some power to change the current dynamics and are slowly becoming more assertive. For example, consider the story of Matt and Christina Might. They enrolled their son Bertrand in a study at Duke to see if genetic sequencing could provide a diagnosis for his unknown medical condition. The Duke team suspected that an NGLY1 mutation caused his problems, but couldn’t confirm the diagnosis without more data from other patients with the same condition. Researchers from different hospital systems “hesitate to share data with potential competitors, both to protect their funding and to insure that they get credit for their work,” so the situation seemed bleak. The Mights decided that they “couldn’t wait for the culture of scientific research to change,” and found more patients themselves by writing a blog post on the Internet. The Mights accomplished the seemingly impossible: they succeeded in getting clinicians from around the world to “collaborate on a single, all-encompassing clinical report on the disease”. There was a slight delay in publishing the paper, though, because the researchers had a difficult time “agreeing on the order in which the authors’ names would appear”.
In his coverage of the Biden Moonshot Summit, David Shaywitz explains that there is a culture of data hoarding which is preventing progress that is only possible by analyzing larger datasets. He goes on to suggest that “one response to a health system that seems unwilling to part with data is for patients to drive this process themselves; let patients request their data, and drive the sharing.”
Other ways in which patients could insist upon having more of their needs met by research are explored by Richard Smith in a BMJ blog post. He recommends that patients ask researchers certain questions before deciding whether or not to participate in a clinical trial. For example, he suggests that patients decline to enter a trial if the researcher(s) will not commit to publishing the trial results along with the data. He tells patients that they have the ability to influence trial design and further explains that:
Researchers are not used to being asked such questions, and some might be astonished—and even offended—to be asked, but patients have an important, even if so far largely unrealised, role to play in raising the relevance and quality of clinical trials and, indeed, all research.
The power balance between patients and expert researchers is shifting, and the boundaries separating the two groups are blurring.
The changing dynamics of patient involvement in research are being shaped by many complex and interconnected societal factors and trends. Increased social connectivity, the democratization of medical information, and the emergence of a patient empowerment movement have disrupted the hierarchical and power structures in the research community. This paper has only attempted an introductory, exploratory analysis of the involvement of patients in medical research and it is unclear what the trajectory of current trends will be. One thing is certain, though, and that is that the trajectory will not be solely shaped by professional doctor/scientist researchers, but rather, will be determined by an interplay of the priorities, perspectives, and resources of all stakeholders (including the lay patient community).
(Note: I may eventually license the paper using Creative Commons, but a friend has given me some good suggestions about how the paper might be improved. I’m not sure if I will decide to revisit and revise this paper.)
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