Stem Cell Rev and Rep (2014) 10:753–760 DOI 10.1007/s12015-014-9534-z
Representations of Stem Cell Clinics on Twitter Kalina Kamenova & Amir Reshef & Timothy Caulfield
Published online: 27 June 2014 # Springer Science+Business Media New York 2014
Abstract The practice of travelling abroad to receive unproven and unregulated stem cell treatments has become an increasingly problematic global phenomenon known as ‘stem cell tourism’. In this paper, we examine representations of nine major clinics and providers of such treatments on the microblogging network Twitter. We collected and conducted a content analysis of Twitter posts (n=363) by these establishments and by other users mentioning them, focusing specifically on marketing claims about treatment procedures and outcomes, discussions of safety and efficacy of stem cell transplants, and specific representations of patients’ experiences. Our analysis has shown that there were explicit claims or suggestions of benefits associated with unproven stem cell treatments in approximately one third of the tweets and that patients’ experiences, whenever referenced, were presented as invariably positive and as testimonials about the efficacy of stem cell transplants. Furthermore, the results indicated that the tone of most tweets (60.2 %) was overwhelmingly positive and there were rarely critical discussions about significant health risks associated with unproven stem cell therapies. When placed in the context of past research on the problems associated with the marketing of unproven stem cell therapies, this analysis of representations on Twitter suggests that discussions in social media have also remained largely uncritical K. Kamenova : A. Reshef : T. Caulfield Health Law Institute, Faculty of Law, University of Alberta, Edmonton, AB, Canada T. Caulfield (*) Canada Research Chair in Health Law & Policy, Professor, Faculty of Law and School of Public Health, University of Alberta, Edmonton, AB, Canada e-mail: [email protected] K. Kamenova (*) Health Law Institute, Law Centre, University of Alberta, Edmonton, AB T6G 2H5, Canada e-mail: [email protected]
of the stem cell tourism phenomenon, with inaccurate representations of risks and benefits for patients. Keywords Stem cells . Unproven stem cell treatments . Stem cell tourism . Social media . Representation . Twitter . Content analysis
Introduction Online direct-to-consumer (DTC) advertising of scientifically unproven and unregulated stem cell therapies has been the subject of considerable media and scholarly attention. [1–3] While over the past fifteen years the development of novel stem cell-derived treatments has proceeded at a slow pace, clinics and other providers around the world continue to capitalize on the existing market of desperate patients from affluent countries whose conditions are not curable with conventional treatments. Most stem cell therapies advertised on the providers’ websites have not undergone rigorous clinical testing for safety or efficacy and are unlicensed in the patients’ countries of origin. [1, 4–6] This practice of travelling abroad to receive unregulated stem cell transplants has become an increasingly problematic global phenomenon, with a few exceptions such as hematopoietic progenitor cell transplantation for leukemia which is generally considered a proven and safe procedure. [4] Research has shown that providers routinely exaggerate potential benefits, understate health risks, and charge substantial fees for novel cell therapies, ranging from US $5,000 to US $39, 500. [7] Although stem cell tourism is a highly controversial practice, news media portrayals in the patients’ countries, e.g. Canada, the United States, the United Kingdom, Australia and New Zealand, between 2006 and 2009 were overly optimistic about benefits, risks, and efficacy. [8] Furthermore, the increased media and policy scrutiny of the phenomenon in recent years has not
754
discouraged providers in treatment destinations from advocating the use of stem cell transplants on their websites. [6]. A number of studies have explored online promotional claims by providers and media representations of the stem cell tourism phenomenon, [1, 6, 8] however, there has not been an attempt to track the clinics’ activities on social media Internet websites. In recent years, social networks such as YouTube, Twitter, and Facebook have emerged as an important source of health information for the general public, and have also been utilized as a form of viral marketing that can spread a message quickly through the online community. [9] In this paper, we examine the Twitter profiles of stem cell clinics and the content of messages they have posted on the micro-blogging site. We collected English language tweets (n=363) between 2009 and 2013 that were tweeted by clinics in popular destinations of stem cell tourism or by users specifically referring to activities by these clinics. Nine clinics were included in the study sample, all of which had an established record of marketing uncontrolled and unproved stem cell therapies directly to patients via their websites (Table 1). These providers operate in jurisdictions such as China, Ukraine, Mexico, India, and Dominican Republic, where there is no stringent regulatory oversight of experimental cell treatments. We conducted content analysis of relevant English language tweets to evaluate the clinics’ presence on the microblogging network, focusing on marketing claims about treatment procedures and outcomes, discussions of safety and efficacy of stem cell transplants, and specific representations of patients’ experiences. Social networking and most user-generated content associated with Web 2.0 have commonly been associated with online activities of younger adults and teens. [9] Social networking sites are currently becoming increasingly popular among older Internet users and their demographics are rapidly changing. Survey research conducted as part of the Pew Research Center’s Internet & American Life Project has shown that 72 % of online adults use social networking sites (e.g., Twitter, Pinterest, Facebook, and LinkedIn), with users ages 65 and older increasing their presence from 13 % in 2,009 to 43 % in 2013. [10] Twitter is by no means an exception from this trend, as the percentage of Twitter users has more than doubled since November 2010 and is currently standing at 18 % of all Internet users. [10] Although Internet users ages 18–29 are still the most likely to tweet (approximately 30 %), 55 % of Twitter users are 35 years or older and the average age of the Twitter user is 37.3 years old. [10] Blogging on Twitter is done through status updates – messages limited to 140 characters that can be posted through a web form, instant message online, or text message via smart phone. Twitter was launched in July 2006 by Jack Dorsey and is presently in the top 10 most visited
Stem Cell Rev and Rep (2014) 10:753–760
Internet sites, with 645,750,000 registered users and an average of 58 million tweets per day. [11]. Twitter has increasing potential for interpersonal health communication (e.g. physicians can use it to disseminate health-related information or answer disease-related questions), health information sharing and as a forum for medical support groups. [9, 12] Although most tweets contain discussions on trivial matters that concern only the parties involved, researchers have found that some useful information about news and geopolitical events embedded in the Twitter stream. [13] Twitter data has also been used as an important source for health communication research, particularly to identify public opinion trends and track actual disease activities over time. [13, 14] Although tweets are often perceived as having limited information value, there is a shared assumption that analyzing millions of messages can create provide insight into emerging health trends and public perceptions in conditions of health emergencies as shown in a study of Twitter users’ activity during the influenza A H1N1 pandemics. [15] Health information in social media can be used to conduct “infodemiology” (information epidemiology) studies for public health, and Twitter in particular has shown to be a valuable trend-tracking tool for real-time content analysis and knowledge translation research to inform public health policy and practice. [16, 17] Finally, social media websites are increasingly used for spreading public health messages targeting specific populations, e.g. HPV vaccination education, sun safety awareness, tobacco cessation, and acne treatments. [9]. Although Twitter has enormous potential for DTC, peer-topeer and viral marketing, it may not be the most preferred media platform for advertisers. Unlike more traditional media channels, social media is highly interactive and provides ample opportunities for consumer feedback and engagement. For companies, advertising through interactive communication platforms may work both ways – it encourages consumer engagement on a mass scale, but also involves the risk of losing control over the content of their promotional message. A good example of the slow take-up of social networking sites for promotional activities is the pharmaceutical industry. Drug companies in the US spend billions of dollars on DTC advertising annually, yet only a very tiny fraction of that is allocated for social networking sites. [18] Pharmaceutical promotion through Web-based social media has presented new challenges to regulators such as the Food and Drug Administration (FDA). The major concern is to ensure truthful information about risks and benefits is conveyed to patients, especially as the FDA does not have the resources to monitor a high volume of health-related marketing in various interactive promotional media platforms. [18] In fact, it is recognized that companies are better equipped to surveil online discussions of their products and they routinely engage in surveillance activities to protect their brand and trademark. [18] After years of deliberations, the FDA finally released on January 14, 2014
Stem Cell Rev and Rep (2014) 10:753–760
755
Table 1 Profiles of clinics represented on twitter Clinic, Website, Twitter account
City & Country
Stem cell therapies/products & services marketed
ActiStem Ltd. http://www.actistem.org
Hong Kong
AdiStem Ltd. http://www.adistem.com @AdiStemUSA
Hong Kong (HQ); Bangkok (regional office)
Beijing Puhua International Hospital http://www.puhuachina.com @stemcellspuhua
Beijing, China
Beike Biotech http://beikebiotech.com/ @beikebiotech
Shenzhen, China
EmCell http://www.emcell.com/ @emcells
Kiev, Ukraine
Medra Inc http://stemcellofamerica.com/
Dominican Republic
Progenacell http://www.progenacell.com/ @ProgenaCell
Mexico
ReeLabs http://www.reelabs.com/ @Reelab1
India
Cosmetic treatments with ActiStem dermal containing extract from sheep (ovine) placenta AdiLight-2 (activates adipose-derived stem cells through photo-modulation). Pharmaceuticals derived from adipose-derived stem cells such as peptide therapeutics for chronic diseases, including HIV/AIDS, Pain and Type II Diabetes. Spinal cord injury, cerebral palsy, ALS, stroke, Parkinson’s disease, MS, MSA (all types of multiple system atrophy), muscular dystrophy, Batten disease, scleroderma, diabetes, cancers, liver cirrhosis. Anti-aging and rejuvenation treatments. Adult stem cell-derived treatments. Stem cell storage, testing, clinical translation, R& D of stem cell technologies and products, stem cell drug screening, stem cell technology exchange and employee training. Banking of stem cells from umbilical cord, fat, bone marrow, placenta and amnion membrane. Stem cell banks in Jiangsu Province, Shenzhen City, and Anhui Province, others in the provinces of Henan, Liaoning, Guizhou and India under construction. ALS/MND, Alzheimer’s Disease Anemia, Autism, Arterial Hypertension, Cancer, Diabetes, Eye Diseases, Erectile Dysfunction, HIV/AIDS, Idiopathic Encephalopathy, Liver Diseases, Multiple Sclerosis, Muscular Dystrophy, Parkinson’s Disease, Rheumatoid Arthritis, SMA, Ulcerative Colitis, Crohn’s Disease. Anti-ageing treatments with fetal cells. Alzheimer’s disease, autism, brain damage, cancer, cerebral palsy, chronic pain, down syndrome, epilepsy, fibromyalgia, lupus, mitochondrial disorder, MS, muscular dystrophy, Parkinson’s, rheumatoid arthritis, seizures, spinal cord injury, spinal muscular atrophy, and stroke. Autism, Parkinson’s disease, diabetes, cerebral palsy, chronic obstructive pulmonary disease, Hepatitis C, kidney disease, liver disease, macular degeneration (AMD), and MS. ProGencaCell treatment protocols use autologous stem cells, allogeneic stem cells (cord blood cells), and German Xeno cells derived from animals. Cord blood banking. Stem cell treatments for cardiovascular disease, liver disorders, bone disorders, neuro-muscular disorders, kidney disorders, lung disease, diabetes, eye disorders, cancer, hair loss, scars, and erectile dysfunction. Anti-aging and skin aging treatments with dental stem cells and stem cells from bone marrow and umbilical cord.
a draft guidance document for industry on the use of interactive promotional media for prescription human and animal drugs and biologics. [19].
Materials and Methods We conducted searches on Twitter for 18 providers of unproven stem cell treatments identified in a recent study on stem cell tourism examining historical and current versions of the clinics’ websites. [6] Only nine of those clinics were mentioned in tweets. Seven providers had also created accounts on Twitter. Using Twitter’s built-in search engine, we collected
all English language tweets (n=363) between 2009 and 2013 that mentioned these nine stem cell treatment providers or were tweeted by the clinics themselves (Table 2). We developed an inductive coding frame to conduct a content analysis of Twitter posts based on the following categories: 1) date of tweet; 2) sender; 3) presence of advertising or promotional content; 4) mentions of patients’ experiences; 5) whether patients’ experiences, when referenced, were represented as positive or negative; 6) claims about efficacy of stem cell treatments; 7) types of stem cell transplants mentioned; 8) diseases treated with stem cell transplants, if mentioned in the tweets; and 9) the overall tone of the tweet in relation to the stem cell tourism phenomenon. For the purposes of coding,
756
Stem Cell Rev and Rep (2014) 10:753–760
Table 2 Tweets by clinics in data set Clinic
Percentage in data set
Actistem AdiStem Beijing Puhua international Beike biotech EmCell Medra Inc. Progenacell ReeLabs XCell Total
3.1 16.7 5.3 22.3 18.7 4.2 6.4 21.2 2.2 100.0
“promotional content” was broadly defined as representations of clinics in a positive light or claims about the safety and efficacy of treatments and positive patients’ experiences suggestive of efficacy (e.g. links to blogs, websites, or you-tube videos with testimonials). Such claims could be made by the providers and their representatives (e.g., physicians or other medical personnel affiliated with the clinics, medical tourism brokers, etc.), patients and their families, or third parties not involved in medical tourism activities. Since textual content analysis is generally considered to be subjective, we tested 10 % of the tweets (n=36) for inter-coder reliability using Cohen’s kappa. As shown in Table 3, the inter-coder reliability assessment on different variables produced a mean score of k=0.849 indicating almost perfect inter-rater agreement according to the benchmark standards for interpreting kappa developed by Landis and Koch. [20].
Results We found the following historical distribution of tweets by year: 2.5 % in 2009; 24.5 % in 2010; 47.4 % in 2011; 10.9 % in 2012; and 14.8 % in 2013. As shown on Fig. 1, almost half of tweets referring to providers of unproven stem cell treatments in the last 5 years were tweeted in 2011. 79.1 % of tweets were posted by users that did not seem affiliated with those providers, 10.6 % were tweeted by the providers themselves, 2.8 % were posted by physicians or other medical personnel representing providers, and 7.2 % by medical tourism brokers. For example, we found out that two medical tourism brokers had tweeted about Beike Biotech, including PlacidWay (@PlacidWay19), a health and wellness tourism company that claims to combine affordable healthcare with exotic medical travel options and Health Check Costa (@MedTourismCostaRica), a concierge style medical tourism facilitator. In addition, Dr. James Bradstreet, Adjunct Professor at the Southwest College of Naturopathic Medicine in Arizona (@DrJBradstreet) had tweeted repeatedly about the
EmCell centre, including claims about successes in treating autism and diabetes type 1 with stem cells. His tweets provided links to patients’ testimonies posted on his website. Advertisements of stem cell tourism activities and promotional content were found in 84.7 % of the tweets, while 15.3 % did not contain mentions of such nature. Figure 2 shows the distribution of tweets with promotional content that refer to particular clinics or were sent by those clinics: 19.78 % mentioned ReeLabs; 16.71 % mentioned AdiStem; 15.32 % mentioned Emcell; 14.76 % mentioned Beike Biotech; 6.13 % mentioned Progenacell; 5.29 % mentioned Beijing Puhua International; 3.90 % mentioned Medra Inc.; 2.51 % mentioned Actistem; and 0.28 % promoted XCell. All tweets posted by stem cell clinics, physicians or other medical personnel representing providers, and medical tourism brokers included some form of promotional content. The coding results showed that patient experiences were discussed in 11.1 % of the tweets. 10 % of tweets described patient experiences in a positive light, and 1.1 % mentioned negative experiences or outcomes as a result of unregulated stem cell treatments. All negative assessments were of treatments provided by XCell-Center, a stem cell clinic in Germany. Most Twitter posts with positive representations of patients’ experiences referred to two clinics: Beijing Puhua International in China (19 tweets) and EmCell in Ukraine (10 tweets). We analyzed the tweets to identify unsubstantiated claims about efficacy of various stem cell therapies marketed by the clinics. Approximately one third of the Twitter posts in the data set indicated the effectiveness of treatments that were offered to patients (Fig. 3). Claims about efficacy frequently referenced EmCell (13.65 % of tweets), AdiStem (6.69 % of tweets), Beijing Puhua International (5.29 % of tweets), and ReeLabs (4.18 % of tweets). Table 3 Inter-coder agreement on key variables* Variable
Kappa score
N of valid cases
Sender Promotional/advertising material Patient experience Yes/No Patient experience presented as positive/ negative Claims about efficacy of stem cell treatments Types of stem cell transplants Overall tone regarding stem cell tourism Mean kappa score
0.994 0.686 0.854 0.858
36 36 36 36
0.758
36
1.000 0.798 0.849
36 36 36
* The level of agreement between coders was interpreted based on the Landis & Koch Benchmark Scale proposed in 1977. This scale has suggested the following as standards for strength of agreement denoted by kappa:
Representations of Stem Cell Clinics on Twitter Kalina Kamenova & Amir Reshef & Timothy Caulfield
Published online: 27 June 2014 # Springer Science+Business Media New York 2014
Abstract The practice of travelling abroad to receive unproven and unregulated stem cell treatments has become an increasingly problematic global phenomenon known as ‘stem cell tourism’. In this paper, we examine representations of nine major clinics and providers of such treatments on the microblogging network Twitter. We collected and conducted a content analysis of Twitter posts (n=363) by these establishments and by other users mentioning them, focusing specifically on marketing claims about treatment procedures and outcomes, discussions of safety and efficacy of stem cell transplants, and specific representations of patients’ experiences. Our analysis has shown that there were explicit claims or suggestions of benefits associated with unproven stem cell treatments in approximately one third of the tweets and that patients’ experiences, whenever referenced, were presented as invariably positive and as testimonials about the efficacy of stem cell transplants. Furthermore, the results indicated that the tone of most tweets (60.2 %) was overwhelmingly positive and there were rarely critical discussions about significant health risks associated with unproven stem cell therapies. When placed in the context of past research on the problems associated with the marketing of unproven stem cell therapies, this analysis of representations on Twitter suggests that discussions in social media have also remained largely uncritical K. Kamenova : A. Reshef : T. Caulfield Health Law Institute, Faculty of Law, University of Alberta, Edmonton, AB, Canada T. Caulfield (*) Canada Research Chair in Health Law & Policy, Professor, Faculty of Law and School of Public Health, University of Alberta, Edmonton, AB, Canada e-mail: [email protected] K. Kamenova (*) Health Law Institute, Law Centre, University of Alberta, Edmonton, AB T6G 2H5, Canada e-mail: [email protected]
of the stem cell tourism phenomenon, with inaccurate representations of risks and benefits for patients. Keywords Stem cells . Unproven stem cell treatments . Stem cell tourism . Social media . Representation . Twitter . Content analysis
Introduction Online direct-to-consumer (DTC) advertising of scientifically unproven and unregulated stem cell therapies has been the subject of considerable media and scholarly attention. [1–3] While over the past fifteen years the development of novel stem cell-derived treatments has proceeded at a slow pace, clinics and other providers around the world continue to capitalize on the existing market of desperate patients from affluent countries whose conditions are not curable with conventional treatments. Most stem cell therapies advertised on the providers’ websites have not undergone rigorous clinical testing for safety or efficacy and are unlicensed in the patients’ countries of origin. [1, 4–6] This practice of travelling abroad to receive unregulated stem cell transplants has become an increasingly problematic global phenomenon, with a few exceptions such as hematopoietic progenitor cell transplantation for leukemia which is generally considered a proven and safe procedure. [4] Research has shown that providers routinely exaggerate potential benefits, understate health risks, and charge substantial fees for novel cell therapies, ranging from US $5,000 to US $39, 500. [7] Although stem cell tourism is a highly controversial practice, news media portrayals in the patients’ countries, e.g. Canada, the United States, the United Kingdom, Australia and New Zealand, between 2006 and 2009 were overly optimistic about benefits, risks, and efficacy. [8] Furthermore, the increased media and policy scrutiny of the phenomenon in recent years has not
754
discouraged providers in treatment destinations from advocating the use of stem cell transplants on their websites. [6]. A number of studies have explored online promotional claims by providers and media representations of the stem cell tourism phenomenon, [1, 6, 8] however, there has not been an attempt to track the clinics’ activities on social media Internet websites. In recent years, social networks such as YouTube, Twitter, and Facebook have emerged as an important source of health information for the general public, and have also been utilized as a form of viral marketing that can spread a message quickly through the online community. [9] In this paper, we examine the Twitter profiles of stem cell clinics and the content of messages they have posted on the micro-blogging site. We collected English language tweets (n=363) between 2009 and 2013 that were tweeted by clinics in popular destinations of stem cell tourism or by users specifically referring to activities by these clinics. Nine clinics were included in the study sample, all of which had an established record of marketing uncontrolled and unproved stem cell therapies directly to patients via their websites (Table 1). These providers operate in jurisdictions such as China, Ukraine, Mexico, India, and Dominican Republic, where there is no stringent regulatory oversight of experimental cell treatments. We conducted content analysis of relevant English language tweets to evaluate the clinics’ presence on the microblogging network, focusing on marketing claims about treatment procedures and outcomes, discussions of safety and efficacy of stem cell transplants, and specific representations of patients’ experiences. Social networking and most user-generated content associated with Web 2.0 have commonly been associated with online activities of younger adults and teens. [9] Social networking sites are currently becoming increasingly popular among older Internet users and their demographics are rapidly changing. Survey research conducted as part of the Pew Research Center’s Internet & American Life Project has shown that 72 % of online adults use social networking sites (e.g., Twitter, Pinterest, Facebook, and LinkedIn), with users ages 65 and older increasing their presence from 13 % in 2,009 to 43 % in 2013. [10] Twitter is by no means an exception from this trend, as the percentage of Twitter users has more than doubled since November 2010 and is currently standing at 18 % of all Internet users. [10] Although Internet users ages 18–29 are still the most likely to tweet (approximately 30 %), 55 % of Twitter users are 35 years or older and the average age of the Twitter user is 37.3 years old. [10] Blogging on Twitter is done through status updates – messages limited to 140 characters that can be posted through a web form, instant message online, or text message via smart phone. Twitter was launched in July 2006 by Jack Dorsey and is presently in the top 10 most visited
Stem Cell Rev and Rep (2014) 10:753–760
Internet sites, with 645,750,000 registered users and an average of 58 million tweets per day. [11]. Twitter has increasing potential for interpersonal health communication (e.g. physicians can use it to disseminate health-related information or answer disease-related questions), health information sharing and as a forum for medical support groups. [9, 12] Although most tweets contain discussions on trivial matters that concern only the parties involved, researchers have found that some useful information about news and geopolitical events embedded in the Twitter stream. [13] Twitter data has also been used as an important source for health communication research, particularly to identify public opinion trends and track actual disease activities over time. [13, 14] Although tweets are often perceived as having limited information value, there is a shared assumption that analyzing millions of messages can create provide insight into emerging health trends and public perceptions in conditions of health emergencies as shown in a study of Twitter users’ activity during the influenza A H1N1 pandemics. [15] Health information in social media can be used to conduct “infodemiology” (information epidemiology) studies for public health, and Twitter in particular has shown to be a valuable trend-tracking tool for real-time content analysis and knowledge translation research to inform public health policy and practice. [16, 17] Finally, social media websites are increasingly used for spreading public health messages targeting specific populations, e.g. HPV vaccination education, sun safety awareness, tobacco cessation, and acne treatments. [9]. Although Twitter has enormous potential for DTC, peer-topeer and viral marketing, it may not be the most preferred media platform for advertisers. Unlike more traditional media channels, social media is highly interactive and provides ample opportunities for consumer feedback and engagement. For companies, advertising through interactive communication platforms may work both ways – it encourages consumer engagement on a mass scale, but also involves the risk of losing control over the content of their promotional message. A good example of the slow take-up of social networking sites for promotional activities is the pharmaceutical industry. Drug companies in the US spend billions of dollars on DTC advertising annually, yet only a very tiny fraction of that is allocated for social networking sites. [18] Pharmaceutical promotion through Web-based social media has presented new challenges to regulators such as the Food and Drug Administration (FDA). The major concern is to ensure truthful information about risks and benefits is conveyed to patients, especially as the FDA does not have the resources to monitor a high volume of health-related marketing in various interactive promotional media platforms. [18] In fact, it is recognized that companies are better equipped to surveil online discussions of their products and they routinely engage in surveillance activities to protect their brand and trademark. [18] After years of deliberations, the FDA finally released on January 14, 2014
Stem Cell Rev and Rep (2014) 10:753–760
755
Table 1 Profiles of clinics represented on twitter Clinic, Website, Twitter account
City & Country
Stem cell therapies/products & services marketed
ActiStem Ltd. http://www.actistem.org
Hong Kong
AdiStem Ltd. http://www.adistem.com @AdiStemUSA
Hong Kong (HQ); Bangkok (regional office)
Beijing Puhua International Hospital http://www.puhuachina.com @stemcellspuhua
Beijing, China
Beike Biotech http://beikebiotech.com/ @beikebiotech
Shenzhen, China
EmCell http://www.emcell.com/ @emcells
Kiev, Ukraine
Medra Inc http://stemcellofamerica.com/
Dominican Republic
Progenacell http://www.progenacell.com/ @ProgenaCell
Mexico
ReeLabs http://www.reelabs.com/ @Reelab1
India
Cosmetic treatments with ActiStem dermal containing extract from sheep (ovine) placenta AdiLight-2 (activates adipose-derived stem cells through photo-modulation). Pharmaceuticals derived from adipose-derived stem cells such as peptide therapeutics for chronic diseases, including HIV/AIDS, Pain and Type II Diabetes. Spinal cord injury, cerebral palsy, ALS, stroke, Parkinson’s disease, MS, MSA (all types of multiple system atrophy), muscular dystrophy, Batten disease, scleroderma, diabetes, cancers, liver cirrhosis. Anti-aging and rejuvenation treatments. Adult stem cell-derived treatments. Stem cell storage, testing, clinical translation, R& D of stem cell technologies and products, stem cell drug screening, stem cell technology exchange and employee training. Banking of stem cells from umbilical cord, fat, bone marrow, placenta and amnion membrane. Stem cell banks in Jiangsu Province, Shenzhen City, and Anhui Province, others in the provinces of Henan, Liaoning, Guizhou and India under construction. ALS/MND, Alzheimer’s Disease Anemia, Autism, Arterial Hypertension, Cancer, Diabetes, Eye Diseases, Erectile Dysfunction, HIV/AIDS, Idiopathic Encephalopathy, Liver Diseases, Multiple Sclerosis, Muscular Dystrophy, Parkinson’s Disease, Rheumatoid Arthritis, SMA, Ulcerative Colitis, Crohn’s Disease. Anti-ageing treatments with fetal cells. Alzheimer’s disease, autism, brain damage, cancer, cerebral palsy, chronic pain, down syndrome, epilepsy, fibromyalgia, lupus, mitochondrial disorder, MS, muscular dystrophy, Parkinson’s, rheumatoid arthritis, seizures, spinal cord injury, spinal muscular atrophy, and stroke. Autism, Parkinson’s disease, diabetes, cerebral palsy, chronic obstructive pulmonary disease, Hepatitis C, kidney disease, liver disease, macular degeneration (AMD), and MS. ProGencaCell treatment protocols use autologous stem cells, allogeneic stem cells (cord blood cells), and German Xeno cells derived from animals. Cord blood banking. Stem cell treatments for cardiovascular disease, liver disorders, bone disorders, neuro-muscular disorders, kidney disorders, lung disease, diabetes, eye disorders, cancer, hair loss, scars, and erectile dysfunction. Anti-aging and skin aging treatments with dental stem cells and stem cells from bone marrow and umbilical cord.
a draft guidance document for industry on the use of interactive promotional media for prescription human and animal drugs and biologics. [19].
Materials and Methods We conducted searches on Twitter for 18 providers of unproven stem cell treatments identified in a recent study on stem cell tourism examining historical and current versions of the clinics’ websites. [6] Only nine of those clinics were mentioned in tweets. Seven providers had also created accounts on Twitter. Using Twitter’s built-in search engine, we collected
all English language tweets (n=363) between 2009 and 2013 that mentioned these nine stem cell treatment providers or were tweeted by the clinics themselves (Table 2). We developed an inductive coding frame to conduct a content analysis of Twitter posts based on the following categories: 1) date of tweet; 2) sender; 3) presence of advertising or promotional content; 4) mentions of patients’ experiences; 5) whether patients’ experiences, when referenced, were represented as positive or negative; 6) claims about efficacy of stem cell treatments; 7) types of stem cell transplants mentioned; 8) diseases treated with stem cell transplants, if mentioned in the tweets; and 9) the overall tone of the tweet in relation to the stem cell tourism phenomenon. For the purposes of coding,
756
Stem Cell Rev and Rep (2014) 10:753–760
Table 2 Tweets by clinics in data set Clinic
Percentage in data set
Actistem AdiStem Beijing Puhua international Beike biotech EmCell Medra Inc. Progenacell ReeLabs XCell Total
3.1 16.7 5.3 22.3 18.7 4.2 6.4 21.2 2.2 100.0
“promotional content” was broadly defined as representations of clinics in a positive light or claims about the safety and efficacy of treatments and positive patients’ experiences suggestive of efficacy (e.g. links to blogs, websites, or you-tube videos with testimonials). Such claims could be made by the providers and their representatives (e.g., physicians or other medical personnel affiliated with the clinics, medical tourism brokers, etc.), patients and their families, or third parties not involved in medical tourism activities. Since textual content analysis is generally considered to be subjective, we tested 10 % of the tweets (n=36) for inter-coder reliability using Cohen’s kappa. As shown in Table 3, the inter-coder reliability assessment on different variables produced a mean score of k=0.849 indicating almost perfect inter-rater agreement according to the benchmark standards for interpreting kappa developed by Landis and Koch. [20].
Results We found the following historical distribution of tweets by year: 2.5 % in 2009; 24.5 % in 2010; 47.4 % in 2011; 10.9 % in 2012; and 14.8 % in 2013. As shown on Fig. 1, almost half of tweets referring to providers of unproven stem cell treatments in the last 5 years were tweeted in 2011. 79.1 % of tweets were posted by users that did not seem affiliated with those providers, 10.6 % were tweeted by the providers themselves, 2.8 % were posted by physicians or other medical personnel representing providers, and 7.2 % by medical tourism brokers. For example, we found out that two medical tourism brokers had tweeted about Beike Biotech, including PlacidWay (@PlacidWay19), a health and wellness tourism company that claims to combine affordable healthcare with exotic medical travel options and Health Check Costa (@MedTourismCostaRica), a concierge style medical tourism facilitator. In addition, Dr. James Bradstreet, Adjunct Professor at the Southwest College of Naturopathic Medicine in Arizona (@DrJBradstreet) had tweeted repeatedly about the
EmCell centre, including claims about successes in treating autism and diabetes type 1 with stem cells. His tweets provided links to patients’ testimonies posted on his website. Advertisements of stem cell tourism activities and promotional content were found in 84.7 % of the tweets, while 15.3 % did not contain mentions of such nature. Figure 2 shows the distribution of tweets with promotional content that refer to particular clinics or were sent by those clinics: 19.78 % mentioned ReeLabs; 16.71 % mentioned AdiStem; 15.32 % mentioned Emcell; 14.76 % mentioned Beike Biotech; 6.13 % mentioned Progenacell; 5.29 % mentioned Beijing Puhua International; 3.90 % mentioned Medra Inc.; 2.51 % mentioned Actistem; and 0.28 % promoted XCell. All tweets posted by stem cell clinics, physicians or other medical personnel representing providers, and medical tourism brokers included some form of promotional content. The coding results showed that patient experiences were discussed in 11.1 % of the tweets. 10 % of tweets described patient experiences in a positive light, and 1.1 % mentioned negative experiences or outcomes as a result of unregulated stem cell treatments. All negative assessments were of treatments provided by XCell-Center, a stem cell clinic in Germany. Most Twitter posts with positive representations of patients’ experiences referred to two clinics: Beijing Puhua International in China (19 tweets) and EmCell in Ukraine (10 tweets). We analyzed the tweets to identify unsubstantiated claims about efficacy of various stem cell therapies marketed by the clinics. Approximately one third of the Twitter posts in the data set indicated the effectiveness of treatments that were offered to patients (Fig. 3). Claims about efficacy frequently referenced EmCell (13.65 % of tweets), AdiStem (6.69 % of tweets), Beijing Puhua International (5.29 % of tweets), and ReeLabs (4.18 % of tweets). Table 3 Inter-coder agreement on key variables* Variable
Kappa score
N of valid cases
Sender Promotional/advertising material Patient experience Yes/No Patient experience presented as positive/ negative Claims about efficacy of stem cell treatments Types of stem cell transplants Overall tone regarding stem cell tourism Mean kappa score
0.994 0.686 0.854 0.858
36 36 36 36
0.758
36
1.000 0.798 0.849
36 36 36
* The level of agreement between coders was interpreted based on the Landis & Koch Benchmark Scale proposed in 1977. This scale has suggested the following as standards for strength of agreement denoted by kappa:
