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Other challenges for the PHC R&D and PBRNs in developing countries
When is a Research Network not a Research Network – or perhaps it’s more?
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Rodolfo J. Stusser, Havana, Cuba Family Medicine Research, Vedado Health Community Center. http://havanacenter.familydoctors.net
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Dear Professors James W. Mold and Kevin A. Peterson, Thank you so much for your deep paper “Primary Care (PHC) Practice- Based Research Networks (PBRNs): Working at the Interface between Research and Quality Improvement” in USA. Please, forgive me for the delay in sending this commentary, but my wife after a one-year follow-up of an increasing Westergren RSR now in 60, is having in the last three weeks dramatic abdominal pains after meals and at nights. First, studying it I have learned very much about the PBRNs and on the concretion of the concepts and dynamics of research and development (R&D) in PHC and community family medicine (CFM) in the USA. Unfortunately, my country as most countries delayed in their development, also has the same gaps, but even greater than yours, apart of many others. However, the greatest problem is the lack of awareness about the importance of let to stay behind in the development of the PHC R&D and PHC PBRNs, to interface those gaps, while US, Canada, and other neighbor countries have been working in them since 30 years ago. In our singular case, this is a greater need for us, because we have had in the last decade the highest rate of family physicians per inhabitants at least in the Americas. Fifteen years ago, being in Nicaragua, motivated by WHO/PAHO policy, I returned to Havana and let our cancer research center to work as research methodologist networking with 40 solo family practices in the staff of a star PHC Community Center, in the research goals that the PHC allied professors (parents) defined for the CFM residents/specialists (children). Then our CFM program was only seven years old, and I could not establish a true PBRN, due to lack of support for five years at the local and at the national levels, and frustrated had to go to a clinical research center again. In 2002, I returned to other PHC Community Center with projects in informatics and telemedicine, being already member of the AAFP, and detected the great possibilities in the internet era to develop virtual PBRNs, and made proposals of a national PBRN with our provinces in 2004 and in 2005. Nevertheless, locally and nationally have continued the lack of the felt need of the PBRNs, and even of the possibilities to any physician to participate in your AAFP national annual meetings and 33-year NAPCRG and WONCA international meetings, to be updated about all the PBRNs developments. You handled very well the complex PHC and CFM R&D challenges: a) balance in academic/practical views/approaches of orthodox clinical research and quality of care improvement, discovery and application, researcher and practitioner (translation of practice into research as well as of research into practice); b) balance between traditional clinical/population investigation, trials, studies, and community-based participatory R&D to understand and respond to individual patients and families needs and concerns in CFM and PHC allied specialties; and c) design of electronic R&D collaboration networks/centers in CFM and PHC, with state health departments, insurance/private enterprises, professional associations, community organizations, family and individual support. I would like to add other CFM and PHC R&D challenges related to the ones you have discussed, crucial for the southern countries, when creating these PBRNs in the future: -Balance between own clinical research in CFM and PHC allied specialties/levels of care, others (secondary/tertiary specialties/levels of care) clinical/population trials, epidemiological studies, and health services R&D; between biomedical/technological R&D, and mental, moral, social medicine/health R&D; as well as bio-psychosocial integrative R&D in CFM and PHC allied specialties/levels of care, including the latter: community, village, neighborhood, home, family, and individual. -Redesign of CFM specialty theory/practice after the integration in it of the basic biomedical results through an applied R&D program of the human genome project, human brain, and other biomedical basic projects, into a modern bioethical framework. -Design and realization of a basic R&D program on human development, ecology, behavior, moral and culture projects for CFM and PHC specialties/levels; of an applied R&D program in healthy life behavior and culture, and in clinical economics R&D of poorest/poor villages/neighborhoods for CFM and PHC specialties/levels. -Redesign of CFM specialty theory/practice after the integration of these psychosocial health results in it through an applied R&D program of the above basic social health R&D program results into a modern bioethical framework too. -Design of electronic R&D collaboration networks/centers in CFM and PHC, with state, insurance/private secondary/tertiary care hospitals, clinics, institutes, and scientific industrial centers; and of electronic R&D collaboration programs of virtual centers in CFM and PHC, with patients, family and community clinical organizations/foundations. -Design of undergraduate/graduate programs on CFM and PHC, and of postgraduate masters, philosophical doctorates, and post-doctoral study programs on CFM and PHC, all in clinical medicine schools --with the help of the laboratory and public health sciences schools--, even through electronic-education/learning/exchanging communities for remote/rural areas. -Design of applied R&D program in telemedicine, tele-health and tele-home care with wired and non wired applications for CFM and PHC specialties/levels, apart from applications of tertiary/secondary specialties/levels of care; of electronic-science and R&D collaboration programs at long distances in CFM and PHC specialties/levels, at the national and global levels; of R&D in electronic health R&D hypothesis-driven discovery and in electronic health records data-driven discovery or mining support systems in CFM and PHC specialties/levels; and of R&D in the own patient self e-health care, e-education/learning, and e-research collaboration systems with clinicians in CFM and PHC specialties/levels, within a modern bioethical framework. -Design of meta-research in own and new CFM clinical, family and community integrative research spaces, apart of the research spaces diffused to CFM through the PHC allied specialties and from the tertiary/secondary specialties/levels of care. -Balance in national and global investments programs of capacity strengthening and building in CFM and PHC R&D horizontal specialties/levels, in relation to the more vertical specialties/levels of care, and scientific industrial enterprises; and re-engineering the health R&D policy, program, and system at the national and global levels, including the scientific R&D needs of the CFM and PHC specialties/levels of care, as so important for medicine and public health as the tertiary/secondary ones. I hope this feedback helps to understand the complexities of the development of PHC and CFM R&D PBRNs in the southern countries. Hope you both much success in your valuable endeavors, Rodolfo J. Stusser, MD, MSc, MPH. International member of the AAFP Competing interests: None declared |
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John W. Beasley, Madison, WI, USA Professor Emeritus, University of Wisconsin
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The excellent article by Mold and Peterson highlights something that all of us in the PBRN business have been thinking for some time – that PBRN’s are more than just “clinical laboratories” with the desired “product” being just publications (new knowledge). They emphasize that the networks are entities that do more than create new knowledge that can be fed back to clinicians through the publication process and appropriately stress the bidirectionality of information flow. I particularly like the idea of the network as “a forum for intellectual exchange” and the idea of a “learning community”. These have great face validity. However, the article itself begs for additional research. For example, there is an absence of good evidence that participation in networks actually enhances the Translation of Research Into Practice (TRIP) -- despite most of us taking this as an article of faith. I do not know if, for example, any of the work of COOP has led to its members communicating better with their patients. I would like to think it has – and would like even more to ¬know that it has! To quote from a presidential campaign from a few years back “where’s the beef?” I’d love to see the data that supports our oft-made argument. While Mold and Peterson give some examples for a few networks, we are far from substantiating that, in general, our belief is correct. I also note, that despite the expansiveness of their definition of PBRNs they do not address some of the other types of primary care research that networks do. I have found the taxonomy of Starfield (1) which was extended by Mold and Green (2) to be very useful in defining the scope of primary care research – and thus research that PBRNs may contribute to. Finally, I think we may have to really expand the notion of networks and perhaps even revisit their goals and missions. The authors touch on this with their reference to “a forum for intellectual exchange” which is turning out to be a large part of the activity of the International Federation of Primary Care Research Networks (www.ifpcrn.org). They also provide a mechanism for communication between individual members and between networks and researchers in other academic fields who now have an identified contact to establish connections with persons with an interest in primary care research. Finally, they provide for some members a sense of colleagueship and involvement. One WReN member wrote in response to a survey: "I attach most of WReN's significance to more personal issues. Primary care research is important to me. Without WReN, I would have no way to maintain my enthusiasm and fulfill my personal goals. It is important to get people of like minds together at the annual meeting to reinforce one another's philosophies. Don't get discouraged if the answers to your questions don't all emphasize "research agendas" and "national goals". For many like me it is much more personal." (Terry L. Hankey, M.D., Personal Communication, 1997) 1. Starfield B. A framework for primary care research. J Fam Pract. Feb 1996;42(2):181-185. 2. Mold JW, Green LA. Primary care research: revisiting its definition and rationale. J Fam Pract. Mar 2000;49(3):206-208. Competing interests: None declared |
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