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Researchers Have a Moral Responsibility to Meet Participants

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Researchers Have a Moral Responsibility to Meet Participants PERSONAL VIEW Researchers have a moral responsibility to meet participants’ immediate health needs If a project is not willing or able to accommodate such needs, ethics committees should reject it, writes Allen G P Ross y colleagues and I currently coor- national and international ethical review boards pital but ultimately did not have potentially life- dinate a five year clinical trial take such matters under consideration when saving operations. To go from small rural villages investigating the neglected tropical reviewing global health research grants? Should to Manila, home to more than 22 million people, disease schistosomiasis in the remote global health funding agencies shoulder some can be overwhelming, particularly if patients Philippines. Twenty two villages of the costs? What role should have no family there. Also, tak- When a global health Mand almost 20 000 residents in the municipalities national and local government ing time off work and raising of Laoang and Palapag are taking part. have? study is conducted in an living expenses while in hospital The Northern Samar province is considered In our study, I believe that we underserved area, local is simply beyond many people’s the second poorest in the country, with more than have a moral responsibility to treat inhabitants may see it means. If governments cannot half of its rural inhabitants living below the poverty patients presenting with other ill- as a great opportunity take full care of such patients and line. The prevalence of malnutrition is high, with nesses when they ask, despite no to get the help they so their families, what can be done stunting, thinness, and wasting seen in 49%, 28%, request from an ethics committee desperately need for them? and 60% of all children respectively (unpublished that we do so. We treat patients for The developing world has data). The burden of infectious disease is also high. simple ailments, such as acute respiratory infec- large disparities in healthcare provision. Parts of The prevalence of schistosomiasis was found to be tions, rashes, arthritis, and headache and refer rural Asia and Africa have as few as one or two doc- 27.1% (n=10 436; 95% confidence interval 26.3% them to specialty care when appropriate. tors for every 100 000 inhabitants.2 When a global to 28.0%) and for infection with any soil transmit- The local government has provided drugs for health study is conducted in such an underserved ted helminth (Ascaris, Trichuris, and hookworm) primary care. The provincial government has area, local inhabitants may see it as a great oppor- 77.2% (n=10 434; 76.4% to 78.0%).1 helped with the cost of transporting surgical tunity to get the help they so desperately need. While examining participants I am often asked patients to the capital, Manila, and several chari- However, it is unethical to conduct such to help with health problems that are beyond the table public hospitals in Manila have helped with research without meeting participants’ immedi- scope of the research that has been funded by the poor patients’ costs. The national health insurer, ate health needs. If a global health project is not National Health and Medical Research Council of PhilHealth (Philippines Health Insurance Corpo- willing or able to accommodate such needs, ethics Australia. This presents an ethical dilemma. Do ration), covers only 20% of medical bills; patients committees should reject the application. investigators involved in global health research must make up the shortfall, perhaps with the help I suggest that a small fraction—for example, have a responsibility to examine patients in stud- of national charitable organisations such as the 5%—of all global health grants should be set ies for illnesses not being studied—and to treat Philippine Charitable Sweepstakes. aside for the immediate primary care needs of patients and refer them to specialty care? If so, To complicate matters further, some patients participants. Moreover, care should be provided who should pay the associated expenses? Should were referred, transferred, and admitted to hos- for patients who need specialty care or surgery. Ethics committees should ensure that this forms bmj.com ̻ News: Revision of part of all grant applications and is implemented. Helsinki declaration aims District, state, and national government should be to prevent exploitation of asked to cover any additional expense. And, again, study participants (BMJ ethics review boards should not approve studies 2013;347:f6401) if the government is not willing or able to do this. ̻ Editorial: India’s new Once a study has ethical approval, careful policy to protect research monitoring and evaluation of study participants participants (BMJ 2013;347:f4841) by licensed doctors with supervision by the ethical review board would be needed. All grants would need annual audit to ensure that the 5% of allo- cated funds have indeed been spent on primary care. Reprehensibly, at present very few global Research participants health studies worldwide provide such a service in Northern Samar who for the rural poor being studied. presented with health Allen G P Ross is professor, Griffith Health Institute, Griffith problems beyond the University, Gold Coast Campus, Australia scope of the study [email protected] funding; from left to I thank the UBS-Optimus Foundation and the National Health right, top to bottom: chin and Medical Research Council, Australia, for providing tumour, dermatological financial support for research in the Philippines. disease, neck tumour, Competing interests: None declared. neck tumour, abdominal Provenance and peer review: Not commissioned; not ascites from advanced externally peer reviewed. schistosomiasis, and Patient consent obtained. dermatological disease References are in the version on bmj.com. Cite this as: BMJ 2014;348:g1423 26 BMJ | 1 MARCH 2014 | VOLUME 348 LAST WORDS FROM THE FRONTLINE Des Spence Lost in translation The last days of school: shaving foam has any idea what is going on. In an really saying? “I read something over teachers’ cars, food dye in the utterly randomised, multicentred, and online” (I think have cancer); “I read pool, running in the corridors, throw- truly double blinded prospective study in the paper” (I think I have cancer); ing eggs, smoking on school property, conducted over decades, I have man- “I read an official NHS circular” (I ties off, makeup on (boys and girls), aged to decode some of these phrases think I have cancer); “I have a cough/ and heading off to the pub at lunch- to d isprove the dull hypothesis. cold/sore throat” (I need antibiotics time, embarrassed by the lameness Consider these common phrases now and I don’t care what you say); of our pranks. People who have noth- used by doctors and then what the “I have had two sore throats this year” ing to lose can be dangerous, so with patient really hears: “I think we should (I want my tonsils out); “My child has one month to go before I stop writing do some tests” (you think I’ve got can- a fever/cough/sore throat” (I want my weekly column perhaps I should What is said in the cer); “I think we should get a second to see a paediatrician); “I brought a throw caution to the wind and just opinion” (I’ve got cancer); “Your tests list” (I’m getting my money’s worth, start offending everyone. However, I consultation rarely were mainly normal but we should you fat, overpaid public servant); “I thought I should do something differ- reflects what is repeat the test” (I’ve got cancer); “It want a second opinion” (I have pri- ent for a change. heard by doctors just a small lump/growth/shadow/ vate medical insurance); “A medical Communication between doctors and patients alike. mass” (I’ve definitely got cancer); friend suggested” (this what I want and patients is the subject of many Often neither the “I think we could try some chemo- you to do). confusing and profoundly dull books doctor nor the therapy” (I’m going to die); “Your This is original, real world research, full of silly phrases and clunky sim- patient has any idea cholesterol/blood pressure/sugars and I wonder what other researchers plistic constructs. And communication what is going on are slightly high” (I’m going to have in communication have found. remains obstructed by doublespeak, a stroke or amputation, or both); “Do Des Spence is a general practitioner, Glasgow pompous professional jargon, and you have any idea about what is caus- [email protected] coded clichés. What is said in the con- ing your condition?” (this guy has no Competing interests: None declared. sultation rarely reflects what is heard Twitter clue what he is doing). Provenance and peer review: Commissioned; not by doctors and patients alike. Often ̻ Follow Des Spence on And when patients say these famil- peer reviewed. neither the doctor nor the patient Twitter @des_spence1 iar phrases to doctors, what are they Cite this as: BMJ 2014;348:g1749 BMJ BLOG OF THE WEEK Richard Smith Nourishing the world About a billion people end the day Population growth, he said, is rural development, not just hungry, another billion are obese, is seen by the public as the big improvements in agriculture and food prices are steadily rising. problem on the demand side of the but also in education, health, Clearly something is very wrong food crisis, but a bigger problem transport, energy supply, finance, with the world’s food system, is changing food patterns, with insurance, security, and access and the Economist recently many in the developing world to markets. Equally important, he held a conference on Feeding adopting diets with more meat, added, is to invest in women. A the World.
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