Physician-Scientists: An Endangered Species?

Can excellent scientists be excellent physicians at the same time?

“I would like to ask you about a trip to Thailand.”

This is not the kind of question I expected from a patient in my cardiology clinic at the Veterans Administration hospital in Indianapolis. Especially since this patient lived in rural Indiana and did not strike me as the adventurous type.

“A trip to Thailand?”, I mumbled, “Well, ummm…I am sure……ummm…I guess the trip will be ok. Just take your heart medications regularly, avoid getting dehydrated and I hope you have a great vacation there. I am just a cardiologist and if you want to know more about the country you ought to talk to a travel agent.”

I realized that I didn’t even know whether travel agents still existed in the interwebclickopedia world, so I hastily added “Or just use a travel website. With photos. Lots of photos. And videos. Lots of videos.”

Now it was the patient’s turn to look confused.

“Doctor, I didn’t want to ask you about the country. I wanted to know whether you thought it was a good idea for me to travel there to receive stem cell injections for my heart.”

I was thrilled because for the first time in my work as a cardiologist, a patient had asked me a question which directly pertained to my research. My laboratory’s focus was studying the release of growth factors fromstem cells and whether they could help improve cardiovascular function. But my excitement was short-lived and gradually gave way to horror when the patient explained the details of the plan. A private clinic in Thailand was marketing bone marrow cell injections to treat heart patients with advanced heart disease. The patient would have to use nearly all his life savings to travel to Thailand and stay at this clinic, have his bone marrow extracted and processed, and then re-injected back into his heart in order to cure his heart disease.

Much to the chagrin of the other patients in the waiting room, I spent the next half hour summarizing the current literature on cardiovascular cell therapies for the patient. I explained that most bone marrow cells were not stem cells and that there was no solid evidence that he would benefit from the injections. He was about to undergo a high-risk procedure with questionable benefits and lose a substantial amount of money. I pleaded with him to avoid such a procedure, and was finally able to convince him.

I remember this anecdote so well because in my career as a physician-scientist, the two worlds of science and clinical medicine rarely overlap and this was one of the few exceptions. Most of my time is spent in my stem cell biology laboratory, studying basic mechanisms of stem cell metabolism and molecular signaling pathways. Roughly twenty percent of my time is devoted to patient care, treating patients with known cardiovascular disease in clinics, inpatient wards and coronary care units.

“Portrait of Dr. Gachet” – Painting by Vincent van Gogh (Public Domain via Wikimedia)

As scientists, we want to move beyond the current boundaries of knowledge, explore creative ideas and test hypotheses. As physicians, we rely on empathy to communicate with the patient and his or her family, we apply established guidelines of what treatments to use and our patient’s comfort takes precedence over satisfying our intellectual curiosity. The mystique of the physician-scientist suggests that those of us who actively work in both worlds are able to synergize our experiences from scientific work and clinical practice. Being a scientist indeed has some impact on my clinical work, because it makes me evaluate clinical data on a patient and published papers more critically. My clinical work helps me identify areas of research which in the long-run may be most relevant to patient care. But these rather broad forms of crosstalk have little bearing on my day-to-day work, which characterized by mode-switching, vacillating back and forth between my two roles.

Dr. J. Michael Bishop, who received the Nobel Prize in 1989 with Dr. Harold Varmus for their work on retroviral cancer genes (oncogenes), spoke at panel discussion at the 64th Lindau Nobel Laureate Meeting (2014) about the career paths of physician-scientists in the United States. Narrating his own background, he said that after he completed medical school, he began his clinical postgraduate training but then exclusively focused on his research. Dr. Bishop elaborated how physician-scientists in the United States are often given ample opportunities and support to train in both medicine and science, but many eventually drop out from the dual career path and decide to actively pursue only one or the other. The demands of both professions and the financial pressures of having to bring in clinical revenue as well as research grants are among the major reasons for why it is so difficult to remain active as a scientist and a clinician.

To learn more about physician-scientist careers in Germany, I also spoke to Dr. Christiane Opitz who heads a cancer metabolism group at the German Cancer Research Center, DKFZ, in Heidelberg and is an active clinician. She was a Lindau attendee as a young scientist in 2011 and this year has returned as a discussant.

JR: You embody the physician-scientist role, by actively managing neuro-oncology patients at the university hospital in Heidelberg as well as heading your own tumor metabolism research group at the German Cancer Research Center (Deutsches Krebsforschungszentrum or DKFZ in Heidelberg). Is there a lot of crosstalk between these two roles? Does treating patients have a significant influence on your work as a scientist? Does your work as cancer cell biologist affect how you evaluate and treat patients?

CO: In my experience, my being a physician influences me on a personal level and my character but not so much my work as a scientist. Of course I am more aware of patients’ needs when I design scientific experiments but there is not a lot of crosstalk between me as a physician and me as a scientist. I treat patients with malignant brain tumors which is a fatal disease, despite chemotherapy and radiation therapy. We unfortunately have very little to offer these patients. So as a physician, I see my role as being there for the patients, taking time to talk to them, provide comfort, counseling their families because we do not have any definitive therapies. This is very different from my research where my aim is to study basic mechanisms of tumor metabolism.

There are many days when I am forced to tell a patient that his or her tumor has relapsed and that we have no more treatments to offer. Of course these experiences do motivate me to study brain tumor metabolism with the hope that one day my work might help develop a new treatment. But I also know that even if we were lucky enough to uncover a new mechanism, it is very difficult to predict if and when it would contribute to a new treatment. This is why my scientific work is primarily driven by scientific curiosity and guided by the experimental results, whereas the long-term hope for new therapies is part of the bigger picture.

JR: Is it possible that medical thinking doesn’t only help science but can also be problematic for science?

CO: I think in general there is increasing focus on translational science from bench-to-bedside, the aim to develop new treatments. This application-oriented approach may bear the risk of not adequately valuing basic science. We definitely need translational science, because we want patients to benefit from our work in the basic sciences. On the other hand, it is very important to engage in basic science research because that is where – often by serendipity – the real breakthroughs occur. When we conduct basic science experiments, we do not think about applications. Instead, we primarily explore biological mechanisms.

Physicians and scientists have always conducted “translational research”, but it has now become a very popular buzzword. For that reason, I am a bit concerned when too much focus and funding is shifted towards application-oriented science at the expense of basic science, because then we might lose the basis for future scientific breakthroughs. We need a healthy balance of both.

JR: Does the medical training of a physician draw them towards application-oriented translational science and perhaps limit their ability to address the more fundamental mechanistic questions?

CO: In general, I would say it is true that people who were trained purely as scientists are more interested in addressing basic mechanisms and people who were trained as physicians are more interested in understanding applications such as therapies, therapeutic targets and resistance to therapies.

They are exceptions, of course, and it is ultimately dependent on the individual. I have met physicians who are very interested in basic sciences. I also know researchers who were trained in the basic sciences but have now become interested in therapeutic applications.

JR: When physicians decide to engage in basic science, do you think they have to perhaps partially “unlearn” their natural tendency of framing their scientific experiments in terms of therapeutic applications because of their exposure to clinical problems?

CO: We obviously need application-oriented science, too. It is important to encourage physicians who want to pursue translational research in the quest of new therapies, but we should not regard that as superior to basic science. As a physician who is primarily working in the basic sciences, I make a conscious effort to focus on mechanisms instead of pre-defined therapeutic goals.

Looking to the future

Dr. Opitz’s description of how challenging it is to navigate between her clinical work in neuro-oncology and her research mirrors my own experience. I have often heard that the physician-scientist is becoming an “endangered species”, implying that perhaps we used to roam the earth in large numbers and have now become rather rare. I am not sure this is an accurate portrayal. It is true that current financial pressures at research funding agencies and academic institutions are placing increased demands on physician-scientists and make it harder to actively pursue both lines of work. However, independent of these more recent financial pressures, it has always been extremely challenging to concomitantly work in two professions and be good at what you do. Dr. Bishop decided to forsake a clinical career and only focus on his molecular research because he was passionate about the research. His tremendous success as a scientist shows that this was probably a good decision.

As physician-scientists, we are plagued by gnawing self-doubts about the quality of our work. Can we be excellent scientists and excellent physicians at the same time? Even if, for example, the number of days we see patients are reduced to a minimum, can we stay up-to-date in two professions in which a huge amount of new knowledge is produced and published on a daily basis? And even though the reduction in clinical time allows us to develop great research programs, does it compromise our clinical skills to a point where we may not make the best decisions for our patients?

We are often forced to sacrifice our week-ends, the hours we sleep and the time we spend with our families or loved ones so that we can cope with the demands of the two professions. This is probably also valid for other dual professions. Physician-scientists are a rare breed, but so are physician-novelists, banker-poets or philosopher-scientists who try to remain actively engaged in both of their professions.

There will always be a rare population of physician-scientists who are willing to take on the challenge. They need all the available help from academic institutions and research organizations to ensure that they have the research funds, infrastructure and optimized work schedules which allow them to pursue this extremely demanding dual career path. It should not come as a surprise that, despite the best support structure, a substantial proportion of physician-scientists will at some point feel overwhelmed by the demands and personal sacrifices and opt for one or the other career. Even though they may choose drop out, the small pool of physician-scientists will likely be replenished by a fresh batch of younger colleagues, attracted by the prospect of concomitantly working in and bridging these two worlds.

Instead of lamenting the purported demise of physician-scientists, we should also think about alternate ways to improve the dialogue and synergy between cutting-edge science and clinical medicine. A physician can practice science-based medicine without having to actively work as a scientist in a science laboratory. A scientist can be inspired or informed by clinical needs of patients without having to become a practicing physician. Creating routine formalized exchange opportunities such fellowships or sabbaticals which allow scientists and clinicians to spend defined periods of time in each other’s work environments may be much more feasible approach to help bridge the gap and engender mutual understanding or respect.

Originally published as “Physician Scientists: An Endangered Species?“ in the Lindau Nobel Laureates Meeting blog.

Should Doctors ‘Google’ Their Patients?

Beware of what you share. Employers now routinely utilize internet search engines or social network searches to obtain information about job applicants. A survey of 2,184 hiring managers and human resource professionals conducted by the online employment website CareerBuilder.com revealed that 39% use social networking sites to research job candidates. Of the group who used social networks to evaluate job applicants, 43% found content on a social networking site that caused them to not hire a candidate, whereas only 19% found information that that has caused them to hire a candidate.

The top reasons for rejecting a candidate based on information gleaned from social networking sites were provocative or inappropriate photos/information, including information about the job applicants' history of substance abuse. This should not come as a surprise to job applicants in the US. After all, it is not uncommon for employers to invade the privacy of job applicants by conducting extensive background searches, ranging from the applicant's employment history and credit rating to checking up on any history of lawsuits or run-ins with law enforcement agencies. Some employers also require drug testing of job applicants. The internet and social networking websites merely offer employers an additional array of tools to scrutinize their applicants. But how do we feel about digital sleuthing when it comes to relationship that is very different than the employer-applicant relationship – one which is characterized by profound trust, intimacy and respect, such as the relationship between healthcare providers and their patients?


The Hastings Center Report is a peer-reviewed academic bioethics journal which discusses the ethics of "Googling a Patient" in its most recent issue. It first describes a specific case of a twenty-six year old patient who sees a surgeon and requests a prophylactic mastectomy of both breasts. She says that she does not have breast cancer yet, but that her family is at very high risk for cancer. Her mother, sister, aunts, and a cousin have all had breast cancer; a teenage cousin had ovarian cancer at the age of nineteen; and that her brother was treated for esophageal cancer at the age of fifteen. She also says that she herself has suffered from a form of skin cancer (melanoma) at the age of twenty-five and that she wants to undergo the removal of her breasts without further workup because she wants to avoid developing breast cancer. She says that her prior mammogram had already shown abnormalities and she had been told by another surgeon that she needed the mastectomy.

Such prophylactic mastectomies, i.e. removal of both breasts, are indeed performed if young women are considered to be at very high risk for breast cancer based on their genetic profile and family history. The patient's family history – her mother, sister and aunts being diagnosed with breast cancer – are indicative of a very high risk, but other aspects of the history such as her brother developing esophageal cancer at the age of fifteen are rather unusual. The surgeon confers with the patient's primary care physician prior to performing the mastectomy and is puzzled by the fact that the primary care physician cannot confirm many of the claims made by the patient regarding her prior medical history or her family history. The physicians find no evidence of the patient ever having been diagnosed with a melanoma and they also cannot find documentation of the prior workup. The surgeon then asks a genetic counselor to meet with the patient and help resolve the discrepancies. During the evaluation process, the genetic counselor decides to ‘google' the patient.


The genetic counselor finds two Facebook pages that are linked to the patient. One page appears to be a personal profile of the patient, stating that in addition to battling stage four melanoma (a very advanced stage of skin cancer with very low survival rates), she has recently been diagnosed with breast cancer. She also provides a link to a website soliciting donations to attend a summit for young cancer patients. The other Facebook page shows multiple pictures of the patient with a bald head, suggesting that she is undergoing chemotherapy, which is obviously not true according to what the genetic counselor and the surgeon have observed. Once this information is forwarded to the surgeon, he decides to cancel the planned surgery. It is not clear why the patient was intent on having the mastectomy and what she would gain from it, but the obtained information from the Facebook pages and the previously noted discrepancies are reason enough for the surgeon to rebuff the patient's request for the surgery.

Two groups of biomedical ethics experts then weigh in on the case and the broader question of whether or not health care professionals should ‘google' patients. The first group of ethics experts feels that uninvited patient ‘googling' is generally a bad practice for three main reasons:

1. It allows healthcare professionals to withdraw from their patients and start relying on online data and information gleaned from social networking sites instead of interacting with the patient and addressing the key issues head-on.
2. The ‘googling' of patients erodes the trust between the healthcare professional and the patient. Patients might feel a sense of betrayal that the healthcare professional "spied" on them.
3. An internet search or review or social network pages linked to the patient represents an invasion of the privacy of the patient. The patient should have the right to decide what information to disclose and what not to disclose, but by surreptitiously obtaining this information, the healthcare provide circumvents the right to privacy of the patient.

A separate panel of reviewers arrives at a very different conclusion and specifically points to this case as an example where it was imperative to ‘google' the patient. As this panel points out, the genetic counselor used a legal method to search the internet and found information on public Facebook profiles after having found many red flags and inconsistencies in the patient's medical history. By finding the information on Facebook, the surgeon and the counselor were able to prevent a self-injurious, deceptive and possibly fraudulent scheme of the patient to go forward. This panel of experts goes as far as saying that it would have actually been irresponsible to not perform the Google search after all the red flags and inconsistencies were identified.
As with all ethical dilemmas, it is difficult to find the correct answer. The first panel brings up good points that the relationship between a healthcare professional and a patient is characterized by trust and respect of privacy, but I tend to agree with the second panel in the case of this patient. It illustrates that the ‘googling' was able to avert an unnecessary and irreversible surgery. This was not just an indiscriminate ‘googling' or searching of private information on Facebook pages. The action was prompted by very real concerns about contradictory information regarding the patient's medical history. On balance, the benefit of avoiding the unnecessary surgery probably outweighed the risk of harming the trust between the healthcare professional and the patient – one which was already undermined by the patient's deception.

This case is rather unusual because it is probably quite rare that a surgeon or a genetic counselor would find valuable information on a patient by merely searching Google or Facebook for information. The type of information that could be of value to most healthcare providers is not usually disclosed on public sites or social network pages. For example, a cardiologist may be interested in finding out why a patient's cholesterol levels are not decreasing despite being placed on optimal medications and being advised to cut down the dietary intake of cholesterol. The cardiologist may suspect that the patient is not really taking the medications or perhaps eating much more dietary cholesterol than the patient is willing to disclose during the doctor's visits. However, it is unlikely that the patient's Facebook page will chronicle whether or not the patient secretly eats cheese omelets on a daily basis or chooses not to take his cholesterol medications.

On the other hand, other healthcare professionals could find important diagnostic clues when reviewing the Facebook page of a patient. Psychiatrists or psychologists may be able to get a much better sense of a patient's mental health and functioning by reviewing the daily posts and interactions of a patient with friends and family members instead of just having to rely on the brief snapshot when they interview the patient during a 30 minute visit.

The study ""To Google or not to Google: Graduate students' use of the Internet to access personal information about clients." by the psychologists DeLillo and Gale surveyed 854 students enrolled in clinical, counseling, and school psychology doctoral programs in the United States and Canada, asking them how they felt about using Google or social networking websites to learn more about their clients/patients. Interestingly, two-thirds of the psychologists-in-training felt that it was never acceptable or usually not acceptable to use web search engines in order to find additional information about their clients. This feeling was even more pronounced when it came to social networking sites: 76.8% of the students thought that this was never acceptable or usually not acceptable.

However, despite these feelings, 97.8% of the students had searched for at least one client's information using search engines such as Google, whereas 94.4% had searched for at least one client's information using social networking websites. Importantly, 76.8% of the therapists who had conducted the searches for client information on social networking sites also reported that it was either always or usually unacceptable! This suggests a significant dissonance between the ethical perception of the therapists and their actions. Furthermore, more than 80% of the therapists who had conducted the searches said that their clients were aware of the internet and social networking searches they were conducting.

The case study with the patient requesting the mastectomy and the high prevalence of using the internet to perform searches on patients/clients by psychologists highlights the ethical dilemmas that are emerging in our culture of digital sharedom. The internet with its often very public display of individual information may be a powerful tool for certain healthcare professionals, but we also need to develop ethical guidelines for how healthcare professionals should use this tool. For medical procedures and tests, healthcare professionals have to obtain informed consent from their patients, discussing the risks and benefits of the procedure or test. Should healthcare professionals also obtain informed consent from patients before they pry into their social media networks? Or would that defeat the purpose because the patients might change the privacy settings or change the content of their posts, knowing that healthcare professionals might be reviewing them? Should healthcare professionals in specialties such as psychology and psychiatry ‘google' all their patients – just like they now ask questions about substance abuse to all patients – or only if there are certain red flags?

The survey of psychologists-in-training highlights the cognitive dissonance that healthcare professionals may experience: They may reject such searches on their clients or patients in the abstract, but they may still choose to perform the searches, probably because they think it will allow them to provide better care for their clients and patient. Instead of relying of idiosyncratic decisions made by professionals, we have to establish the ethical ground-rules for how healthcare professionals can use search engines or social networking sites when obtaining information about individuals. We may have become so accustomed to invasions of our privacy by government agencies and corporations that we sometimes forget that privacy is instrumental in maintaining our individuality. Especially in relationships that are founded on an extraordinary degree of trust, such as those between healthcare professionals and their patients or clients, we need to ensure that this trust is not eroded by the dark side of sharedom.

Acknowledgements: I would like to thank Ryan Hunt from CareerBuilder for clarifying the survey results. An earlier version of this article was first published on  the 3Quarksdaily blog.

References:

1. Rebecca Volpe, George Blackall, and Michael Green; and Danny George, Maria Baker, and Gordon Kauffman, "Googling a Patient" Hastings Center Report 43, no. 5 (2013): 14-15.
2. DiLillo, David; Gale, Emily B. "To Google or not to Google: Graduate students' use of the Internet to access personal information about clients."Training and Education in Professional Psychology, Vol 5(3), Aug 2011, 160-166. doi: 10.1037/a0024441

Volpe R, Blackall G, & Green M (2013). Case study. Googling a patient. Commentary. The Hastings Center report, 43 (5), 14-5 PMID: 24092585





  DiLillo, D., & Gale, E. (2011). To Google or not to Google: Graduate students' use of the Internet to access personal information about clients. Training and Education in Professional Psychology, 5 (3), 160-166 DOI: 10.1037/a0024441

“It Is An Opportunity For Great Joy”

I was about 12 years old when I found out that my grandfather was born on 12/12/12. If he were alive, he would be exactly 100 years old today. I found out about his birthday, when he came to stay with us in Munich for an eye surgery. He was a diabetic and had been experiencing deterioration in his vision. At that time, it was very difficult to find an eye surgeon in Pakistan who would be able to perform the surgery. My grandfather spoke many languages, such as Punjabi, Urdu, Persian, English, Arabic and some Sanskrit, but he could not speak German. His visit occurred during my school holidays, so I was designated to be his official translator for the doctor visits and his hospital stay.

On the afternoon before his surgery, we went to the hospital and I was filling out the registration forms, when I asked my grandfather about his birthday and he said 12/12/12. I was quite surprised to find out that he had such a wonderful combination of numbers, when the lady at the registration desk saw the date and asked me whether he was absolutely sure this was the correct date. I translated this for my grandfather and he smiled and said something along the lines of, “It is more or less the correct date. Nobody is exactly sure, but it is definitely very easy to remember”. I knew that I was supposed be a translator, but this required a bit more finesse than a straightforward translation. One cannot tell a German civil servant that a date is more or less correct. If we introduced uncertainty at this juncture, who knows what the consequences would be.

 I therefore paraphrased my grandfather’s response as, “Yes, it is absolutely correct!”

 She then said, “Eine Schnapszahl!”

 My grandfather wanted me to translate this, and I was again at a loss for words. Schnapszahl literally means Schnapsnumber and is a German expression for repeated digits, such as 33 or 555. The origin of the word probably lies in either the fact that a drunken person may have transient double vision or in a drinking game where one drinks Schnaps after reaching repeated digits when adding up numbers. I was not quite sure how to translate this into Urdu without having to go into the whole background of how German idioms often jokingly refer to alcohol.

 I decided to translate her comment as “What a memorable date”, and my grandfather nodded.

 We were then seen by a medical resident who also pointed out the unique birthday. His comment was “Darauf sollten wir einen trinken!”, which is another German idiom and translates to „we should all have a drink to celebrate this”, but really just means “Hooray!”  or “Great!”

 My grandfather wanted to know what the doctor had said and I was again in a quandary. Should I give him accurate translation and explain that this is just another German idiom and is not intended as a cultural insult to a Pakistani Muslim? Or should I just skip the whole alcohol bit? Translation between languages is tough enough, but translating and showing cultural sensitivity was more than I could handle. My Urdu was not very good to begin with, and all I could come up with the rather silly Urdu translation “It is an opportunity for great joy”. My grandfather gave me a puzzled look, but did not ask any questions.  

 ***** 

 On the day after my grand-father’s eye surgery, the ophthalmologist and the residents came by for morning rounds.  They removed his eye-patch, inspected the eye and told me that everything looked great. He just needed a few more days of recovery and would soon be able to go home. After putting the gauze and eye-patch back on, the doctors moved on to the next patient.

 Once the doctors had completed rounds, I made the acquaintance of the head nurse. She seemed to think that the eye ward was her military regiment and was running it like a drill-sergeant. She walked into every room and ordered all the patients to get out of bed and walk to the common area. Only lazy people stayed in bed, she said. The best way to recuperate was to move about.  

 I told her that I did not think my grandfather was ready to get up. 

“Did any doctor forbid him to get up?”

 “No, not really”, I replied.

 “If he has two legs, he can walk to the common room. If not, we will provide a wheelchair.”

 “He just had surgery yesterday and needs to rest”, I protested and pointed to my grandfather’s eye-patch.

 “Yesterday was yesterday and today is today!” was the response from the drill-sergeant.

 This statement did not seem very profound to me and I was waiting for a further explanation, but the drill-sergeant had already moved on, ordering the patients from the neighboring rooms to get up. My grandfather and I did not have much of a choice, so we joined the procession of one-eyed men who looked like retired, frail pirates. They were slowly shuffling out of their rooms towards the common area.

 The common area consisted of chairs and sofas as well as a couple of tables. I sat down in a corner with my grandfather, and we started talking. He told me stories from his life, including vivid descriptions of how he and his friends proudly defied the British colonialists. My grandfather recited poems from the Gulistan of the Persian poet Saadi for me in Persian and translated them into Urdu. He wanted to know about German history and what I was learning at school. He asked me if I knew any poems by Goethe, because the Indian poet Iqbal had been such a great admirer of Goethe’s poetry.

 We talked for hours. Like most children, I did not realize how much I enjoyed the conversations. It was only years later when my grandfather passed away that I wished I had taken notes of my conversations with him. All I currently have are fragmented memories of our conversations, but I treasure these few fragments.

 I then pulled out a tiny travel chess set that I had brought along, and we started playing chess. I knew that he had trouble distinguishing some of the pieces because of his eye surgery. I took advantage of his visual disability and won every game. During my conversations with my grandfather and our chess games, I noticed that some of the other men were staring at us. Perhaps they were irritated by having a child around. Maybe they did not like our continuous chatting or perhaps they just did not like us foreign-looking folks. I tried to ignore their stares, but they still made me quite uncomfortable.

 On the next day, we went through the same procedure. Morning rounds, drill sergeant ordering everyone to the common area, conversations with my grandfather and our chess games. The stares of the other patients were now really bothering me. I was wondering whether I should walk up to one of the men and ask him whether they had a problem with me and my grandfather. Before I could muster the courage, one of the men got up and walked towards us. I was a bit worried, not knowing what the man was going to do or say to us.

“Can you ask your grandfather, if I can borrow you?”

 “Borrow me?”, I asked, taken aback.

 “He gets to tell you all these stories and play chess with you for hours and hours, and I also want to have someone to talk to.”

 Once he had said that, another patient who was silently observing us chimed in and said that he would like to know if he could “borrow” me for a game of chess. I felt really stupid. The other patients who had been staring at me and my grandfather were not at all racist or angry towards us, they were simply envious of the fact that my grandfather had someone who would listen to him.

 I tried to translate this for my grandfather, but I did not know how to translate “borrow”. My grandfather smiled and understood immediately what the men wanted, and told me that I should talk to as many of the patients as possible. He told me that the opportunity to listen to others was a mutual blessing, both for the narrator as well as the listener.

 On that day and the next few days that my grandfather spent in the hospital, I spoke to many of the men and listened to their stories about their lives, their health, their work and even stories about World War 2 and life in post-war Germany. I also remember how I agreed to play chess, but when I pulled out my puny little travel chess set, my opponent laughed and brought a huge chess set from a cupboard in the common area. He beat me and so did my grandfather who then also played chess with me on this giant-size chess board which obliterated the visual advantage that my travel set had offered.

 *********** 

 Since that time I spent with my grandfather and the other patients on the eye ward, I have associated medicine with narration. All humans want to be narrators, but many have difficulties finding listeners. Illness is often a time of vulnerability and loneliness. Narrating stories during this time of vulnerability is a way to connect to fellow human beings, which helps overcome the loneliness. The listeners can be family members, friends or even strangers. Unfortunately, many people who are ill do not have access to family members or friends who are willing to listen. This is the reason why healthcare professionals such as nurses or physicians can serve a very important role. We listen to patients so that we can obtain clues about their health, searching for symptoms that can lead to a diagnosis. However, sometimes the process of listening itself can be therapeutic in the sense that it provides comfort to the patient.

 Even though I mostly work as a cell biologist, I still devote some time to the practice of medicine. What I like about being a physician is the opportunity to listen to patients or their family members. I prescribe all the necessary medications and tests according to the cardiology guidelines, but I have noticed that my listening to the patients and giving them an opportunity to narrate their story provides an immediate relief.

 It is an indeed an  “an opportunity for great joy”, when the patient experiences the joy of having an audience and the healthcare provider experiences the joy of connecting with the patient. I have often wondered whether there is any good surrogate for listening to the patient. Medicine is moving towards reducing face-to-face time between healthcare providers and patients in order to cut costs or maximize profits. The telemedicine approach in which patients are assessed by physicians who are in other geographic locations is gaining ground. Patients now often fill out checklists about their history instead of narrating it to the physicians or nurses. All of these developments are reducing the opportunity for the narrator-listener interaction between patients and healthcare providers. However, social networks, blogs and online discussion groups may provide patients the opportunities to narrate their stories (those directly related to their health as well as other stories) and find an audience. I personally prefer the old-fashioned style of narration. The listener can give instant feedback and the facial expressions and subtle nuances can help reassure the narrator. The key is to respect the narrative process in medicine and to help the patients find ways to narrate their stories in a manner that they are comfortable with.

Note: An earlier version of this article was first published on the Next Regeneration blog.

Seven Myths About Obesity And Weight Loss?

Whether we cruise the internet, turn on the TV or simply open up our email Inbox, we are bound to encounter advice regarding obesity and weight loss. The problem is that a lot of the circulated opinions about obesity and weight gain are only poorly supported by medical and scientific evidence. The recent paper “Myths, Presumptions, and Facts about Obesity” published in the New England Journal of Medicine on January 31, 2013 by Krista Casazza and colleagues investigates popular notions about obesity and tests whether they are actually backed up by peer-reviewed, evidence-based studies. Their findings are quite surprising and unravel many of the “myths” that relate to obesity and weight problems. The authors refer to these notions as “myths”, because they were unable to find adequate evidence to back them up and even find some evidence that actually refutes the notions. Unfortunately, the data presented by the authors does not always provide definitive evidence, so it may be rather premature to dismiss these widely held beliefs as “myths”.

Here are the seven “myths” about obesity and weight gain that the authors discuss:

Myth number 1: Small sustained changes in energy intake or expenditure will produce large, long-term weight changes.

The authors claim that this is a myth, because it is based on the assumption that small dietary or activity changes yield benefits that continue to accumulate and result in large changes. They think that these calculations overestimate the achieved weight loss, because they do not adequately take into account that the metabolism adapts to the ongoing weight loss. A very obese person with a high caloric intake may respond strongly to a minor increase in daily exercise levels, but the degree of weight loss will decrease over time.

I have to disagree with Casazza and colleagues on this point, because I think that their analysis does not refute the idea of small sustained changes having long-term benefits. One can disagree about the magnitude of the long-term benefit, but there is still a long-term benefit.

Myth number 2: Setting realistic goals for weight loss is important, because otherwise patients will become frustrated and lose less weight.

Casazza and colleagues cite multiple studies which show that ambitious weight loss goals may be associated with better outcomes.

Myth number 3: Large, rapid weight loss is associated with poorer long-term weight-loss outcomes, as compared with slow, gradual weight loss.

The authors point to a meta-analysis (summary analysis of multiple published studies) which showed that very low energy diets (rapid weight loss) and low energy diets are similarly successful in terms of achieving weight loss.

Myth number 4: It is important to assess the stage of change or diet readiness in order to help patients who request weight-loss treatment.

The evidence does not support the need to wait for people being “ready” for weight loss. It may be best to start right away.

Myth number 5: Physical-education classes, in their current form, play an important role in reducing or preventing childhood obesity.

The authors of the paper summarize the results of multiple studies which did not show any statistically significant and consistent benefit of increasing physical education time in school on childhood obesity. They state that there is probably a level of activity that will be beneficial, but that this level may not be achieved in the limited amount of time that children have in school for physical education.

The problem with the analysis of the Casazza and colleagues is that they dismiss the findings as “inconsistent”, but this inconsistency may reflect that some children do benefit from the intervention while others do not. One study, for example, showed a benefit in girls that were overweight, but not in boys. This “inconsistency” does not necessarily invalidate the notion, it merely means that we need to identify the group of children that are most likely to benefit and to perhaps modify the type and duration of physical education in schools to help even more groups of children.

Myth number 6: Breast-feeding is protective against obesity.

Casazza and colleagues reviewed all the major studies in this area and found no significant evidence that breast-feeding children protects them against obesity, but they concede that breast-feeding may be associated with other benefits for the child, unrelated to obesity.

Myth number 7: A bout of sexual activity burns 100 to 300 kcal for each participant.

The authors calculate the amount of calories burned during sexual activity and estimate that the actual amount is probably closer to 20 to 30 kcal (calories) and not 100 to 300

These are the seven “myths” that the authors claim to have debunked. I also think that it is important to note the disclosures at the end of the article, which shows that the authors have very strong ties to food manufacturers. Here are the financial disclosures for just one of the authors:

“Dr. Astrup reports receiving payment for board membership from the Global Dairy Platform, Kraft Foods, Knowledge Institute for Beer, McDonald’s Global Advisory Council, Arena Pharmaceuticals, Basic Research, Novo Nordisk, Pathway Genomics, Jenny Craig, and Vivus; receiving lecture fees from the Global Dairy Platform, Novo Nordisk, Danish Brewers Association, GlaxoSmithKline, Danish Dairy Association, International Dairy Foundation, European Dairy Foundation, and AstraZeneca; owning stock in Mobile Fitness”

These financial ties do not invalidate the analysis, but they should be considered when interpreting the results.

Overall, I think this is an important paper, because it shows us that we often operate under certain assumptions about obesity and weight loss without there being adequate evidence to back it up. This highlights the need for more unbiased research in this area. However, I am disappointed by some of the analyses made by the authors, when they summarily dismiss a belief as a “myth”, just because there are some inconsistencies or differences in estimated benefits. Instead of using the somewhat sensationalist term “myth”, it would have been better if the authors had just focused on pointing out weaknesses in the current evidence and need for more studies.

Image credit: Painting “Schlaraffenland” (“The Land of Cockaigne”, 1567) by Pieter Bruegel the Elder – via Wikimedia

Casazza K, Fontaine KR, Astrup A, Birch LL, Brown AW, Bohan Brown MM, Durant N, Dutton G, Foster EM, Heymsfield SB, McIver K, Mehta T, Menachemi N, Newby PK, Pate R, Rolls BJ, Sen B, Smith DL Jr, Thomas DM, & Allison DB (2013). Myths, presumptions, and facts about obesity. The New England journal of medicine, 368 (5), 446-54 PMID: 23363498

Accuracy of Medical Information on the Internet

We can just Google it!” is becoming our standard response to unanswered questions in life. Whether we are looking for the title of an irritating 80s song, a restaurant serving authentic Icelandic food or the quickest bus route to the Star Trek convention, the Internet usually offers the long-sought answers. However, when we enter key words in a search engine such as Google, we end up with thousands of websites – many of which are barely relevant to what we are looking for or are rife with inaccuracies.

Portrait of Dr. Gachet, by Vincent van Gogh, 

public domain

Identifying the websites with the most accurate and relevant information are critical skills that are necessary for navigating our way in the digital information jungle, but unfortunately, these skills are rarely taught. In most cases, inaccurate or irrelevant information on the internet merely delays us for a few minutes until we do find the answer to what we are looking for. However, when it comes to medical information, inaccurate or irrelevant information could potentially have a major detrimental impact on our well-being. Patients and their family members are increasingly using the internet as a major source of advice regarding their illnesses, treatment options, dietary advice and disease prevention. 

However, little is known about the accuracy of medical advice obtained via the internet. A study entitled “Safe Infant Sleep Recommendations on the Internet: Let’s Google It” by Dr. Rachel Moon and colleagues (published online in the Journal of Pediatrics on August 2, 2012) addresses this question by focusing on the question of sleep safety in infants. The American Academy of Pediatrics (AAP) has published guidelines for reducing the risk of sudden infant death syndrome (SIDS), suffocation or other accidental sleep-related infant deaths. Since such guidelines are written for clinical professionals, they often contain medical jargon that cannot be easily understood by concerned parents that want practical advice regarding how to ensure the sleep safety of their infants. Thus, instead of reading the AAP guidelines, most parents probably enter key phrases related to infant sleep safety into an internet search engine and may follow the advice displayed on the sites identified by the search engine.

Google Girls, by Defluiter at Wikimedia Commons

Dr. Moon and colleagues tested the accuracy of such websites by entering thirteen search phrases such as ” Infant sleep position”, ” Infant co-sleeping” or ” Pacifier sleeping” into the Google search engine, and then cross-checked the medical information offered in the search results with the AAP recommendations, which was used as the standard for medical accuracy.

Since most parents would probably read the first few pages of the Google search results, the researchers only analyzed the first 100 websites identified by each of the thirteen Google searches (total of 1300 websites). Only 43.5% of these 1300 websites contained recommendations that were in line with the AAP recommendations, while 28.1% contained inaccurate information and 28.4% of the websites were not medically relevant. The accuracy was highly dependent on the type of question asked. The search phrase “infant cigarette smoking”, for example, yielded 82% accurate results, while the search phrase “infant home monitors” resulted in only 18% accuracy.

Of note, the researchers also categorized the results by the organization or group that had generated the website. Out of the 1300 websites identified by the searches, 246 (19%) were retail product review site websites and 250 (19%) were websites associated with specific companies or interest groups. Product review retail websites were also the ones which had the lowest level of medical accuracy (8.5%). On the other hand, government websites and websites of national organizations (as identified by URL ending in .org) had the highest level of accuracy (80.9% and 72.5%, respectively).

Surprisingly, educational websites (universities or other websites with URL’s ending in .edu, ebooks, peer-reviewed articles) only had 50.2% accurate medical information, possibly due to the fact that either some of the information was not updated or that a number of the linked articles required a subscription and thus could not be accessed. The majority of the books found by the search engine either provided outdated or irrelevant information, which may have also contributed to the low accuracy rate of educational websites. Blogs and websites of individuals also had very low rates of medical accuracy (25.7% and 30.3%).

This study highlights the opportunities and pitfalls of using the internet to communicate medical information. The internet is providing an opportunity for patients and family members to obtain additional medical information that they did not receive from their physicians, as well as to address questions that may arise and do not warrant a visit to a physician. On the other hand, the study also demonstrates that the quality of medical information on the internet varies widely. Searches for certain key phrases can unwittingly lead a user to websites that promote certain products or treatments without taking the medical evidence and professional guidelines into account.

One key factor to help address this pitfall is for physicians and other healthcare professionals to actively guide patients or family members to website that are likely to have information with high levels of medical accuracy. Instead of placing the burden of discriminating between accurate and inaccurate information on patients, healthcare professionals could advise patients or parents as to what websites should be used to address medical questions that they might have.

Furthermore, government institutions, organizations and educational websites need to realize the importance of maintaining up-to-date and accessible medical information on their websites. Concerted efforts between government or educational institutions, professional organizations and healthcare professionals are necessary so that patients can maximally benefit from the information opportunities afforded by the internet.

This article first appeared on the Scientific American Guest Blog

Chung M, Oden RP, Joyner BL, Sims A, & Moon RY (2012). Safe infant sleep recommendations on the Internet: let's Google it. The Journal of pediatrics, 161 (6), 1080-4 PMID: 22863258

Recent Study Raises Questions About Using Adult Stem Cells for Chronic Heart Disease

A recent clinical study (POSEIDON Randomized Trial) investigated the effects of transplanting bone marrow derived adult stem cells into patients with known heart disease. The results were presented at the 2012 American Heart Association (AHA) meeting in Los Angeles and also published in the article "Comparison of Allogeneic vs Autologous Bone Marrow–Derived Mesenchymal Stem Cells Delivered by Transendocardial Injection in Patients With Ischemic Cardiomyopathy: The POSEIDON Randomized Trial". The article by Dr. Joshua Hare and colleagues appeared in the online edition of the Journal of the American Medical Association on November 6, 2012.
 

 The primary goal of the study was to compare whether adult stem cells from other donors (allogeneic cells) are just as safe as the stem cells derived from the patients' own bone marrow (autologous cells). Thirty patients with a prior heart attack and reduced cardiac function received either allogeneic or autologous cells. The injected cells were mesenchymal stem cells (MSCs), an adult stem cell type that resides within the bone marrow and primarily gives rise to bone, fat or cartilage tissue. MSCs are quite distinct from hematopoietic stem cells (HSCs) which are also present in the bone marrow but give rise to blood cells. In the POSEIDON study, patients underwent a cardiac catheterization and the MSCs were directly injected into the heart muscle. Various measurements of safety and cardiac function were performed before and up to one year after the cell injection.

 The good news is that in terms of safety, there was no significant difference when either autologous or allogeneic MSCs were used. Within the first month after the cell injection, only one patient in each group was hospitalized for what may have been a major treatment related side effect. In the long-run, the number of adverse events was very similar in both groups. The implication of this finding is potentially significant. It suggests that one can use off-the-shelf adult stem cells from a healthy donor to treat a patient with heart disease. This is much more practical than having to isolate the bone marrow from a patient and wait for 4-8 weeks to expand his or her own bone marrow stem cells.

 The disappointing news from this study is that one year following the stem cell injection, there was minimal improvement in the cardiac function of the patients. The ejection fraction of the heart is an indicator of how well the heart contracts and the normal range for healthy patients is roughly 55-60%. In the current study, patients who received allogeneic cells started out with an average ejection fraction of 27.9% and the value increased to 29.5% one year after the cell injection. The patients who received autologous cells had a mean ejection fraction of 26.2% prior to the cell transplantation and a mean ejection fraction of 28.5% one year after the stem cell therapy. In both groups, the improvement was minimal and not statistically significant. A different measure of the functional capacity of the heart is the assessment of the peak oxygen consumption. This measurement correlates well with the survival of a patient and is also used to help decide if a patient needs a heart transplant. There was no significant change in the peak oxygen consumption in either of the two groups of patients, one year after the treatment. Some other measures did indicate a minor improvement, such as the reduction of the heart attack scar size in both patient groups but this was apparently not enough to improve the ejection fraction or oxygen consumption.

 One of the key issues in interpreting the results is the fact that there was no placebo control group. The enrollment in a research study and the cell injection procedure itself could have contributed to minor non-specific or placebo benefits that were unrelated to the stem cell treatments. One odd finding was that the patient sub-group which showed a statistically significant improvement in ejection fraction was the group which received the least stem cells. If the observed minor benefits were indeed the result of the injected cells turning into cardiac cells, one would expect that more cells would lead to greater functional improvement. The efficacy of the lowest number of cells points to non-specific effects from the cell injection or to an unknown mechanism by which the injected cells activate cardiac repair without necessarily becoming cardiac cells themselves.

 The results of this study highlight some key problems with current attempts to use adult stem cells in cardiovascular patients. Many studies have shown that adult stem cells have a very limited differentiation potential and that they do not really turn into beating, functional heart cells. Especially in patients with established, long-standing heart disease, the utility of adult stem cells may be very limited. The damage that the heart of these patients has suffered is probably so severe that they need stem cells which can truly regenerate the heart. Examples of such regenerative stem cells are embryonic stem cells or induced pluripotent stem cells which have a very broad differentiation potential. Cardiac stem cells, which exist in very low numbers within the heart itself, are also able to become functional heart cells. Each of these three cell types is challenging to use in patients, which is why many current studies have resorted to using the more convenient adult bone marrow stem cells.

 Human embryonic stem cells can develop into functional heart cells, but there have been numerous ethical and regulatory concerns about using them. Induced pluripotent stem cells (iPSCs) appear to have the capacity to become functional heart cells, similar to what has been observed for human embryonic stem cells. However, iPSCs were only discovered six years ago and we still have a lot to learn more about how they work. Lastly, cardiac stem cells are very promising but isolating them from the heart requires an additional biopsy procedure which can also carry some risks for the patients. Hopefully, the fact that adult bone marrow stem cells showed only minimal benefits in the POSEIDON study will encourage researchers to use these alternate stem cells (even if they are challenging to use) instead of adult bone marrow stem cells for future studies in patients with chronic heart disease.

 One factor that makes it difficult to interpret the POSEIDON trial is the lack of a placebo control group. This is a major problem for many stem cell studies, because it is not easy to ethically justify a placebo group for invasive procedures such as a stem cell implantation. The placebo patients would also have to receive a cardiac catheterization and injections into the heart tissue, but instead of stem cells, the injections would just contain a cell-free liquid solution. Scientifically, such a placebo control group is necessary to determine whether the stem cells are effective, but this scientific need has to be weighed against the ethics of a “placebo” heart catheterization. Even if one were to ethically justify a “placebo” heart catheterization, it may not be easy to recruit volunteer patients for the study if they knew that they had a significant chance of receiving "empty" injections into their heart muscle.

 There is one ongoing study which is very similar in design to the POSEIDON trial and it does contain a placebo group: The TAC-HFT trial. The results of this trial are not yet available, but they may have a major impact on whether or not bone marrow stem cells have a clinical future. If the TAC-HFT trial shows that the bone marrow stem cell treatment for patients with chronic heart disease has no benefits or only minor benefits when compared to the placebo group, it will become increasingly difficult to justify the use of these cells in heart patients.

 In summary, the POSEIDON trial has shown that treating chronic heart disease patients with bone marrow derived stem cells is not yet ready for prime time. Bone marrow cells from strangers may be just as safe as one’s own cells, but if bone marrow stem cells are not very effective for treating chronic heart disease, than it may just be a moot point.

Hare JM, Fishman JE, Gerstenblith G, Difede Velazquez DL, Zambrano JP, Suncion VY, Tracy M, Ghersin E, Johnston PV, Brinker JA, Breton E, Davis-Sproul J, Schulman IH, Byrnes J, Mendizabal AM, Lowery MH, Rouy D, Altman P, Wong Po Foo C, Ruiz P, Amador A, Da Silva J, McNiece IK, & Heldman AW (2012). Comparison of Allogeneic vs Autologous Bone Marrow-Derived Mesenchymal Stem Cells Delivered by Transendocardial Injection in Patients With Ischemic Cardiomyopathy: The POSEIDON Randomized Trial. JAMA : the journal of the American Medical Association, 1-11 PMID: 23117550


  Image credit: Wikipedia

This article was originally published on the Scilogs Stem Cells Blog: The Next Regeneration

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Study Reveals That Cold-Hearted People May Have A Slightly Higher Cardiac Temperature

NOVEMBER 5, 2012 - LOS ANGELES, California - A sensational new study was presented at the   Annual Conference of the American Society for Innovative Cardiologists. In a study conducted by the cardiologist Dr. Baskin at the Klondike Bar University, fifty-two participants were enrolled for an evaluation of their cardiac temperature. 

Each study participant was individually taken to an examination room in the university hospital and given a Nutella sandwich. Before the participants were able to eat the sandwich, they were asked to walk across a hallway to sign a document in the conference room. Unbeknownst to the study participants, a five year old child was waiting in the hallway for each of the study participants. Upon encountering each participant, the child began crying and demanded to have a bite of the Nutella sandwich. Study participants who gave the child either the whole sandwich or part of it were classified as warm-hearted. On the other hand, participants who ignored the child were considered cold-hearted. Based on these interactions, 39 of the fifty-two participants were cold-hearted while 11 participants showed signs of warm-heartedness. Two subjects had to be excluded  from the study because the child tripped them and removed the Nutella sandwich from the participants before the research team could ascertain whether or not the participants would voluntarily share the sandwich.

Following this initial portion of the study, the participants then underwent a cardiac catheterization performed by Dr. Robbins, another lead investigator in the research team. In this procedure, a catheter containing a temperature probe was advanced via the femoral artery into the aorta and then the left chamber of the heart. Measurements of the actual heart temperature were conducted in at least five different areas of the heart. 

To the surprise of the researchers, the average temperature of the heart in the cold-hearted participant group was slightly higher (37.1 degrees Celsius) than the temperature in the warm-hearted group (36.9 degrees Celsius), although this difference was not statistically significant. At a press conference, Dr. Robbins stated that these findings may represent a major paradigm shift in how the expressions "warm-hearted" and "cold-hearted" are used:

"Our data suggest that there is actually a trend for so-called 'warm-hearted' people to have a lower heart temperature. Even though this is not yet statistically significant, we believe that by increasing the number of study participants, we may soon be able to demonstrate that the 'warm-hearted' people need to be re-classified as 'cold-hearted'. This represents a semantic paradigm shift." 

Some novelists have expressed concerns about these findings and vowed to continue using the  terms "warm-hearted" and "cold-hearted" in the conventional sense, even if the scientific data contradicts this usage.

Open Science and Access to Medical Research

Juggling on the Berlin Wall
Wikimedia / Yann

It is rather odd how often I hear the expression paradigm shift during contemporary scientific presentations and seminars. The expression was popularized by Thomas Kuhn’s book "The Structure of Scientific Revolutions". In that book, Kuhn referred to ground-breaking and revolutionary changes in scientific thought as paradigm shifts, but the expression is so over-used today that even minor discoveries are sometimes marketed as paradigm shifts.

However, once in a while a true paradigm shift does come along and I believe we are currently witnessing such an emerging paradigm shift: open science. This concept entails that research results should be freely and openly accessible to the broad scientific colleagues as well as the public.

The idea of open science goes beyond merely providing public access to published scientific articles because it also includes offering access to the original research data. This would permit fellow researchers to help evaluate and analyze the results, so that the broader scientific community as well as the public can weigh in on the interpretation of the scientific findings. This aspect of open science likely does qualify for being a true paradigm shift, because it will require that we think of ourselves as part of research communities and usher in “networked discovery”, as has been described in a recent book by Michael Nielsen and discussed by Bora Zivkovic.

There are still many obstacles that need to be addressed before “open science” becomes generally accepted. Academic publishers currently reap significant profits from selling high-priced annual subscriptions to academic institutions, and they would lose this income if scientists started publishing their results in open-access journals that freely provide articles to readers without charging for subscriptions or per-article fees. Furthermore, academic institutions and individual scientists may be concerned about how they would apply for patents, if the discovery process is networked and involves score sof collaborating scientists.

Marc Kuchner recently wrote about how individual academic careers are currently built on marketing or branding oneself as a leader in defined research areas. If data and research methodologies are openly shared, it becomes much harder for individual investigators to take credit for discoveries and succeed in the competitive academic rat-race. Therefore, the current academic environment does not reward or provide incentives for openly sharing data or research methods.

Nevertheless, under pressure from the public and funding agencies that rightfully demand public access to the results of the funded research, it is likely that our current research culture will change. We will gradually tear down the walls that exist in our current scientific culture. It will not happen overnight, and we will have to develop new infrastructures to share scientific data, novel ways to assess academic success and reward contributions of individual scientists as well as establish high quality open access journals in a variety of scientific areas.

However, one has to keep in mind that certain areas of research are associated with unique challenges when it comes to the implementation of open science. The obstacles presented openly sharing original data and results in biomedical research may be very different from those in astrophysics.

Clinical research is often funded by the private industry and may thus evade mandates of public funding agencies or not-for-profit foundations to publish in open access journals and openly share results. But even publicly funded biomedical research is characterized by some unique challenges.

One such challenge is the importance of maintaining patient confidentiality when it comes to data sharing. Institutional Review Boards monitor the ethics of studies involving human subjects or patients at all academic institutions and one of their biggest concerns is how personal data of subjects or patients is handled. Usually, the data is de-identifed for the purpose of publication so that any kind of description of the disease state, symptoms, mutations or other findings cannot be linked to individuals.

Only a very small group of trained professionals have access to the names of the subjects or patients and usually only these review the medical charts or personal questionnaires of the participants. If the data-sets are made publicly available, it is imperative that appropriate safeguards are put in place to assure the participants that the data will only be shared in a de-identified format and that anybody seeing the data-set will not be able to link the diseases to the individual identity of the participants.

There is another critical obstacle that needs to be addressed when open science is implemented in medical research. The primary target audience for basic research that is not related to medicine or health consists of fellow scientists and science journalists.

I remember that I started my research career working as a chronobiologist on the circadian rhythms of the unicellular marine algae Gonyaulax polyedra. I doubt that anyone other than fellow scientists or science journalists would have been interested in accessing or interpreting our original data, even if all the data and results had been presented in an open access format.

On the other hand, my research in recent years has shifted to areas that have a more direct medical relevance, such as metabolism and stem cells in vascular disease, heart failure and cancer. My research approach is still focused on basic biological mechanisms, but due to the change in my research topics, I have encountered much broader interest from patients as well as healthcare providers.

Patients with severe chronic illnesses and their loved ones scour the internet for possible new therapies, even if these therapies have not been proven to work. The burden of disease makes them emotionally vulnerable so that they may selectively read and interpret the scientific literature in a manner that gives them false hopes.

For example, I remember talking to one of my heart failure patients who wanted to pay out of his own pocket for a trip to Thailand so that he could receive adult stem cell injections to improve his heart failure. He had found out about this experimental therapy through the internet. Since he did not qualify for any of the ongoing adult stem cell therapy trials in the US, he was extremely interested in trying out this therapy that was being offered overseas (for a substantial fee). He was not aware of the potential side effects of invasive stem cell injections or the importance of quality control and he assumed that it was proven that they work for heart failure. It was only after extensive counseling that he understood there was no clear evidence supporting the therapy and decided to avoid subjecting himself to the questionable therapy.

Many healthcare providers such as practicing physicians do not have a scientific background and are not necessarily trained to critically evaluate research data. They currently rely on review articles or meta-analyses published in respected journals, but they are also influenced by scientific data that are presented to them by representatives or consultants for the pharmaceutical industry.

At first glance, open access to original data sets should increase the transparency of research. However, if we remember the adage that “we only see what we want to see”, we have to realize that open access to research data will also create an opportunity for pharmaceutical companies or for-profit hospitals to promote medical therapies on the basis of limited scientific data.

Selective reporting of the publicly available data by special interest groups could find an excellent breeding ground among emotionally vulnerable patients or healthcare providers who may be easily swayed by the plight and hopes of their patients. One example of selective reporting or selective analysis would be when negative clinical trials are re-analyzed to identify some subgroups of patients that showed a statistically significant improvement with the experimental therapy.

Another example could be that the clinical significance of in vitro cell signaling studies or animal studies could be over-stated. In a traditional academic paper, most of our scientific colleagues (voluntarily or after peer-review) highlight the limitations of their studies. If the data is publicly available, the data would be open to variant interpretations, even by members of the community who are not trained to appropriately interpret the data.

The solution to these potential issues that may arise when we transition to an open science format is not to limit the access of the data. Instead, it is imperative that concomitant with the creation of an open science environment we also build independent institutions or organizations that help interpret the available the data in a manner that non-scientists are able to receive accurate and solid information about the nature and significance of the results.

“Consumer Reports” in the US or “Stiftung Warentest” in Germany routinely test consumer products for their quality and safety, and report them in a manner that members of public can understand the results. Consumers buy subscriptions to their websites or magazines and they enjoy respect among consumers, who have confidence in their unbiased evaluations of products.

One could envision similar institutions that evaluate the biomedical research data and can give solid advice to non-specialists. Ideally, such institutions would need to include independent expert scientists as well as independent experts at communicating science to the broader public. The reason for including expertise in science reporting and science communication is simply due to the fact that many scientists are “communicatively challenged”. It does not help the broader public if a group of scientists charged with providing independent evaluation of publicly available datasets produces reports that are full of technical jargon. As funding agencies and the public push for open access to scientific research data, they also need to push for developing and funding infrastructures that can help the public interpret the openly accessible data.

In summary, I believe that the time for open science and networked discovery has arrived and that it will definitely enhance the progress of scientific research, as long as we build institutions that help us process and understand the flood of scientific data that will be released in the new open science world.

This article was originally published on the Scientific American Guest Blog