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On February 14-15 2002, Health Canada convened an invitational roundtable on knowledge transfer in the use of natural health products (NHPs). The participants at the roundtable included health care practitioners, information providers, academics, researchers, and government liaison, representing the Canadian perspective.
The objectives of the roundtable were:
The roundtable focused on knowledge transfer challenges and opportunities associated with three stakeholder groups, each diverse within itself: healthcare providers, including practitioners of both conventional healthcare and complementary and alternative medicine; the public; and policy makers.
Several general themes emerged from the discussion:
The following report provides a detailed summary of the participants' discussions concerning the challenges and opportunities associated with each stakeholder group, as well as suggestions regarding possible ways to move forward for two of those groups. The characteristics of the ideal knowledge transfer system are described, and a list of resources in knowledge transfer (existing systems) and potential partners in the research and development of knowledge transfer systems for NHPs is presented. This report also lists priorities and an action plan proposed by the group. The action plan put forth consists of four major steps. First, a needs analysis should be commissioned by the Natural Health Products Directorate, possibly with partners, and performed as soon as possible. Second, a knowledge transfer strategy should be developed and implemented, informed by the needs analysis and capitalizing on what currently exists. Third, the strategy should be marketed according to the principles employed by those already skilled at marketing information designed to change behaviour in the identified stakeholder groups (such as the advertising agencies to pharmaceutical companies and federal lobby groups). Finally, an evaluation of the strategy was seen as essential.
A Note on Terminology
Early in the discussion, participants weighed the meanings and merits of the terms 'knowledge transfer' and 'knowledge translation' (both abbreviated as KT). The roundtable decided that while 'knowledge transfer' denotes the idea of a two-way exchange of information to create knowledge, and 'knowledge translation' denotes the need to tailor information to intended recipients, both terms fit broadly within the scope of the day's discussion. Both are used in this report.
The Natural Health Products Directorate (NHPD) is interested in knowing how knowledge transfer/technology transfer can be effectively harnessed to disseminate information concerning natural health products (NHPs) to the Canadian public. An opportunity exists for us to push the knowledge transfer/technology transfer envelope further. The NHPD is also interested in hearing about any knowledge transfer/technology transfer pilot and/or demonstration projects that could be developed to implement the dissemination of information about NHPs.
The objectives of this meeting are:
These objectives were addressed through a facilitated meeting of participants knowledgeable in the fields of NHPs, evidence-based medicine (EBM), and knowledge/information and technology transfer. Ten individuals participated. (See Appendix 1.)
The meeting began with a dinner during which participants had the opportunity to get to know one another, followed by a presentation by David Moher to orient the group to some of the salient issues in the field, as he saw them. The next day, Heather Boon facilitated a full-day session of discussion. The discussions were captured through audiotaping and through notes made on flip charts.
The first point of the discussion was which term to use - 'knowledge transfer' or 'knowledge translation,' and to come to an understanding of what was included in the scope of the chosen term. Are 'knowledge transfer' and 'knowledge translation' synonymous? How do they differ from information dissemination, and knowledge management? Where does 'technology transfer' fit into the picture?
The term 'knowledge translation' was thought to be attractive because it conveys the idea of customizing information before transferring it to stakeholders. 'Knowledge transfer' leaves more openness to the possibility of two-way transfer or exchange of information as an aid to conveying knowledge - for instance, on the one hand, communicating information available to inform a decision that has to be made and, on the other hand, the consumer knowing how to access and understand the information. The information must be tailored to known needs, a process that involves two-way communications. The two-way transfer of information can also serve as a mechanism to create new knowledge. For instance, a system that both collects adverse drug reports and informs on previously reported adverse events - through labeling or other mechanisms - may serve as a knowledge transfer system. Thus, a 'knowledge transfer' system must have the capability of collecting or gaining knowledge from stakeholders as well as disseminating information to them in a useful form.
'Information dissemination' was seen as a one-way transmission of information. The information does go out, but that alone does not imply that the recipient can do anything with it - that they can understand or use it. 'Knowledge transfer' was understood as providing a basis for action.
'Technology transfer' considers the best way to actually do knowledge transfer/technology transfer. It relates to the idea that some media must be used to make the transfer, that we may not know exactly what media is best used, and that different media may suit different audiences. Technology is seen as an enabler for knowledge transfer or translation, although the technology could be the postal system, face-to-face discussion, or some high-powered broadband Internet system. The technology refers to the mechanism of transfer.
'Knowledge management' was thought to be broader than 'knowledge transfer,' and is outside the scope of the day's discussion.
In conclusion, 'knowledge transfer' and 'knowledge translation' together represented two crucial aspects - a system that can both send and receive information in order to impart knowledge in a form useful to the recipient. The system can be enabled by technologies of varying complexities. The term 'KT' will be used throughout this report, and the reader may wish to regard that as representing knowledge transfer or knowledge translation, as they prefer.
Challenges
Opportunities
The perceived issues, challenges, and opportunities with respect to KT and NHPs were identified for health care practitioners (HCPs) as a stakeholder group. An overriding concern was that this group is so overworked that they have difficulty absorbing and processing the available information, even when the desire to do so exists and the avenues for obtaining good information are known. Another core theme was the heterogeneity of this group - some practitioners are well established and relatively easy to reach; others are less organized. In addition, there is no common language, belief system, or paradigm that unifies these stakeholders - thus there is a need for KT where information exchange occurs in a language that reflects the worldview of the participants.
Two halves to the equation were identified: collection and dissemination. The collection aspect should be centralized to result in one warehouse of knowledge. The dissemination aspect involves being more local and more accessible - in multiple formats - to people where they live, as opposed to a central depository. A challenge was to get buy-in from those who may not see a benefit of participating in information sharing because they do not perceive that their needs are being met or that they are going to be supported through throughout the process. However, a two-way system could help get buy-in. A system that focuses on both collection and dissemination may alleviate people's concerns that the information they would provide would be used effectively, as the outputs can be inspected.
It was felt that the timing of the delivery of information is important. Information was considered most valuable if it is delivered at the point of care, the point of use, the point of prescription or recommendation - and at that point, specific types of information are needed: those that enable an informed choice. Yet the challenge here is that attempting to provide only the information needed entails making value judgments about what should be informed decisions and choice. A recurring theme was to have a seal of approval - this was seen as an opportunity to create quality information and to reduce the volume of information. This seal of approval could be at a central authoritative site or on a product label.
A challenge that was identified with particular regard to NHPs was that HCPs are not always involved in the use of NHPs, and that since these products are more like over-the-counter medications (OTCs) than prescription products, the public could access them without going through an HCP.
One issue was what various HCPs should know, or what it is believed they should know. Should pharmacists be knowledgeable about every product sold in their pharmacies, from toothpaste to prescription drugs? Do consumers expect them to be knowledgeable about the NHPs they sell, and therefore seek their advice? Who does the public believe it should get information from?
Sentinel nodes were seen as potentially useful resources. Sentinels can feed information into the system. For instance, in post-marketing surveillance of conventional medicine, some groups have much more active participation in what is otherwise a passive system of reporting. The sentinels can pilot systems that might be developed. They are also key influencers in their community: they facilitate dialogue, and other HCPs seek their advice.
Although physicians make the treatment decisions, other professionals such as pharmacists, nurses, and workers in health food stores were seen as having a vital role as the first line to help consumers navigate the system - a real opportunity was seen here for a team approach with partnerships between physicians and other front line professionals. Young professionals were seen as having some of the highest rates of information uptake, while still in learning mode, and so would be natural targets of KT. Tying KT to the existing CE system was thought to be one way to ensure that information is delivered, not just put out there.
A needs assessment of what various groups want to know is necessary to avoid KT strategies that are based on erroneous assumptions about information needs. It was thought that some body of research exists on how various professionals, such as nurses or physicians, take in information -an important step would be to examine this existing literature.
Given the extreme difficulty of pre-judging what people will need or want to know, the ability to layer information provides an opportunity to leave it up to the users of information to decide what information they want, without becoming overwhelmed. A cursory amount of information is transferred in the beginning, with links back to fuller amounts of information, and at each step there is an opportunity to back up or more information. This ties in with the idea of 'just-in-time' information that can be practically delivered at the point of care, recommendation, or use.
Challenges
Opportunities
The perceived issues, challenges, and opportunities with respect to KT and NHPs were identified for the public as a stakeholder group. Two of the significant perceived challenges associated with the HCPs group were also thought to be significant issues with consumers, as a group. The first is the problem of too much information. The second is the diversity in terms of varying educational levels, languages, cultural and ethnic backgrounds, health care-related literacy, and information literacy.
Language and Legal Jurisdiction. There are numerous other linguistic groups to be reached, in addition to English- and French-speaking Canadians. For instance, there is an initiative to translate Health Canada regulations in Mandarin. The predominance of English-language material (especially on the Internet) is an issue.
The practice of complementary medicine in Quebec is governed quite differently than the rest of Canada based on Quebec's legal system. This can be a barrier to accessing those practitioners, with a few possible exceptions, such as chiropractic and acupuncture.
One opportunity seen for overcoming the challenge of the cultural and linguistic diversity of this stakeholder group is the use of existing communication channels (such as ethnic radio and newspapers) and community influencers to effect KT. Another opportunity was seen to be the high levels of intelligence and education that have been associated with the demographics of NHP users. This is tempered by the possibility that these demographics are changing. One trend cited was that 'street kids' are buying NHPs, despite their limited disposal able income and the cost of these products. Furthermore, it was noted that those with very limited health literacy and education can be made to understand a great deal when it is explained with care and sensitivity and when they are motivated because of the significant health impact that they may experience.
In terms of health care related literacy, there were challenges associated with preconceived notions regarding NHPs - for instance, what the word 'natural' implies. For some, it has positive connotations, but there may also be a problem of consumer confidence and a concern that the product may be adulterated.
Given the variety in the information literacy and health literacy, more than one strategy was thought necessary to effect KT with this stakeholder group. The preeminent strategies were training consumers to evaluate information for themselves, and certifying information or products with some sort of seal of approval, along the lines of "Intel Inside." These were not seen as mutually exclusive strategies. For instance, if the seal of approval were present on a web site, it could be linked to information explaining how that information was assessed, why such an assessment was important, and providing signs that consumers could look for in performing their own assessments. On balance, the biggest payoff was thought to be associated with providing information readily usable to less sophisticated users.
Challenges associated with the seal of approval approach include questions concerning who would govern its application. The marketplace might work well, for instance, or might be influenced by political and commercial interests.
Homegrown products and homegrown advice. In the discussion of HCPs, it was identified that consumers often access packaged products without an HCP as intermediary. An additional challenge is that some complementary and alternative medicine (CAM) therapies might be obtained directly from the producer or might be homegrown, thereby bypassing potential information conduits in health food stores or pharmacies. Regardless of how the product is obtained (bought or grown), many consumers will received their advice from family and neighbours, rather than through more official channels.
The surge in patient-centred care and the understanding that patients have autonomy that they can make choices and be supported in doing that was seen as an opportunity. Many (but not all) consumers are very receptive to health information in the time leading up to and surrounding diagnosis and the initiation of treatment. The opportunity for KT provided by patient-centred care was counterbalanced with direct-to-consumer marketing, which was seen as a challenge. It was anticipated that, before long, we would see direct marketing to children. Birth control and protein supplements were examples in which teenagers are targeted. Thus, there is a need for education at that level. Although they may not read labels, this group is growing up with the Internet and is comprised of more sophisticated consumers of Internet communications than their parents, in many cases.
Knowledge is power, and that can be a challenge and an impediment to patient-centred care. There may be groups of health care providers within complementary medicine (as within conventional medicine) that are reluctant to yield access to their body of knowledge to consumers, out of a fear of a loss of some control, and out of fear that, once the information is known, the treatment may lose its 'magic.'
The complexity of some NHP regimens creates challenges for KT and also raises safety concerns, as does the mixing of NHPs with conventional treatments.
The variety of information sources, and the potential for conflicting information, was seen as a challenge - but the new accessibility of this information is a benefit.
Internet Information Literacy. The Internet was seen as both a challenge and an opportunity vis á vis the consumer stakeholder group. It is a challenge in the sense that commercial information can be easier to access than information that may be of high quality and without a commercial focus, but it is part of the 'hidden Internet,' for instance, held in subscription databases inaccessible to most consumers. Nevertheless, the Internet is an opportunity, as it has provided unprecedented accessibility to new knowledge.
Although the Internet may contain some unreliable or poor-quality information, it has raised awareness that the quality of information does vary, and that the consumer does need to identify good quality information, regardless of whether the source is the Internet, the newspaper, or Reader's Digest. Many consumers are becoming more sophisticated users of information, and many may be receptive to training on how to assess quality.
Opportunities and challenges related to the two-way communication elements of KT were identified. With the widespread use of NHPs comes the opportunity to harness information, to find out what people are doing, and to get a lot of information quickly. On the flipside, big web sites are collecting a significant amount to personal information, some supplied voluntarily (but possibly incorrectly) by the consumer, and some gleaned without the consumer's informed consent through cookies and tracking of accessed information, which raises privacy concerns. Thus, creating mechanisms to obtain real information while putting in privacy barriers was identified as a challenge.
Challenges
Opportunities
The perceived issues, challenges, and opportunities with respect to KT and NHPs were identified for government policy makers as a stakeholder group. Again, the issue can be summarized as a challenge of getting the right information to the right people at the right time, in a format they can use as the basis for action. If that is done successfully with this group, there is tremendous potential for action to occur. Challenges identified in doing this are the lack of continuity due to changing portfolios and personnel, changing mandates, priorities and timelines, and the resulting lack of institutional memory.
To ensure continuity for effective KT in the policy realm, it may not only be necessary to provide knowledge to decision makers, but also to protect the project and to crystallize the mandate through high level support for it or support in the community.
Often, policies need to be made much faster than research can be done, or, in some cases, before the knowledge can get to where it needs to go. Often, the research exists, but decision-makers become aware of it too late for the research findings to influence the policy - this was identified as a gross but common failure in KT. There are windows of receptivity when the decision-maker's attention is focused on the issue - whichever voice can provide input at that point will have great influence.
KT is needed so that information is keyed to the needs of this group - for instance, an HCP and a policy maker use information for very different purposes and the information must be delivered in very different forms.
Barriers to getting knowledge to the people who need it, when they need it, include understanding how policy is actually constructed and who the real decision-makers and key influencers are. Knowing who the players are is important to targeting knowledge to the people who actually have an impact on policy development. In order to know who those people are, you need to know how decisions get made.
A lack of both human and financial resources was also seen as a barrier. There must be ways to identify who in the government is working on a similar project or has a similar vision - and has the money for that vision - so that expertise and financial resources can be pooled and maximized. However, the number of stakeholders, as well as the competing interests that arise through such networks, adds complexity. The high turnover in government adds to the challenge of building such networks.
Despite these challenges, when KT does succeed, the decision-makers can be extremely receptive, and they have the power to initiate action and make change. Change can be very rapid. In the case of Health Canada, it is positioned to have a national impact - a distinct advantage for collecting or disseminating information nationally, rather than province by province. National, proactive dissemination keyed to a network of sentinel receptors was one vision of successful KT.
Reflecting on the respective situations of the various stakeholder groups, several themes emerged. The overriding themes were that too much information is available, and that there is a lack of quality information. Different people have different needs, so the stakeholder-specific KT success factor is to get the right knowledge to the right people at the right time.
Opportunities tend to include using a seal of approval - an outside authority to validate the information - rather than educating the end users to assess the information for themselves. In addition, there are many opportunities to build on existing systems or initiatives, such as continuing medical education (CME) and corporate marketing initiatives, both of which are informed by what changes HCPs behaviour. Similarly, participants felt that strategies for influencing policy makers had to be identified, whether they involve bringing public pressure to bear or influencing administrative assistants and others who have access to and influence upon decision makers (i.e., lobbying efforts.)
Challenges to using a common approach across stakeholder groups were clearly the lack of a common language and belief system, as well as different root needs. The information needs and the uses differed by group. For health care providers, for instance, the question is, What do they need to know to care for the patient? In the policy forum, the issue is more, Who needs to know?. Ultimately, the group decided that this diversity precluded discussing common strategies to be used with the three stakeholder groups, and each was therefore considered separately.
If the overriding issue is getting the right information to the right people at the right time, for the practitioner, the right time is the point of care, and the right knowledge is that which informs decision-making in the care of the patient.
In an ideal system, information concerning what worked, what did not work, and what happened to the patient would be fed back into the system by the practitioner. Practitioners, in turn, need feedback thanking them for the information, letting them know that this is something others have observed, or that this is the first reported instance. In addition, the practitioner should know if a reported event is believed to be a spurious association with an NHP, a real problem, or a critical new occurrence that will be followed up by Health Canada. The current system provides no incentive for use, as the practitioners get nothing back when they submit information.
Such a system was seen as a moderated one, where experts review information - information that is first available only to regulators and individual manufacturers, for instance - and make decisions and disseminate information first to the stakeholders that have contributed to the creation of what is new knowledge. It can later be distributed in a blanket way.
Not everyone is receptive to information. Some do not believe that they need to know more. Although some value to promoting information literacy was seen, it was agreed that these people are not a primary target group for a KT system; some will prefer to stay outside the system, neither contributing nor gaining knowledge back.
There is a number of good information tools available at the point of care, where practitioners can quickly get information to respond to patient's questions, for example. In addition, these could reasonably carry a seal of approval that is widely recognized and accepted by practitioners and possibly also by patients. A greater challenge for knowledge creation is dealing with interactions - novel combinations of products. Most practitioners, whether in conventional or complementary medicine, are comfortable with their product in isolation, but anyone's comfort level gets exceeded quite quickly when patients are using multiple products. This is a place where it is important to collect information.
Defining the user of the KT system. Users include physicians, CAM providers, nurses, pharmacists, self-prescribing consumers, health food store owners and employees, and specialists in areas where there is a high level of NHP use - for instance, cancer or HIV and some chronic diseases. It was recognized that within these users, 80 percent of the benefit was derived from the contributions of 20 percent of the users. Thus the system should be geared to meet their assessed needs, but open for use by the other 80 percent of practitioners. A single system would be developed, but it might be marketed differently to different groups. Although the discussion did not dwell on the issue of marketing, it was recognized as an important aspect of KT.
The next order of business was to define strategies for facilitating research that would create these tools. A 'needs assessment' was identified as something that is required to move forward. The needs assessment would consider where key uses or sentinels get their information, what makes information credible to them, and what questions they need to have answered about NHPs.
It was noted that Dr. Alex Jadad1 was doing work on some issues in the consumer arena: where users get their information, what makes information credible to them, what questions they need to have answered about NHPs.
Identification of the most useful information architecture for the consumer is required. The group envisioned layered information in which top level summary material was presented, with a quality seal, but with an educational layer just below that - maybe with links to a thesaurus, or to the criteria used to approve information. Information on NHPs could be in major popular magazines such as MacLean's, Chatelaine, and Canadian Homemaker.
A KT should be informed by the approach taken by companies like Proctor and Gamble - or their advertising agents - which promote their products, to find out how they would market the symbol, for instance.
Consumers were seen as key influencers of both health care providers and policy makers.
No specific way forward was considered for this group.
KT requires cultural sensitivity, and accessibility to various cultural and linguistic groups. Ideally, it would be simple, easy-to-use, and accessible, providing bite-sized chunks and just-in-time delivery. It would be very proactive: it should find you. It would always be up-to-date and continuously maintained. The information would be validated. It would provide immediate response. There would be a two-way process: the system could also gather information. It would not work in isolation - there would be a common reporting system for NHPs, biologics, drugs and devices. It would be able to collect information because of the value of the information that the provider would get back. Privacy would be well protected. It would have various avenues of access so that consumers could get the types of information that they most often want, and pharmacists, for example, could get the information that they typically want. There would be incentives for its use - rewards through knowledge feedback, but also through CE credits for the practitioner who took the time to act in an evidence-based manner. It would point people to information found useful by others making similar requests, as amazon.com does. Any discussion forum or nomination of other information would be moderated for quality and relevance. It would store a user profile and forward relevant information in the future: it would learn. It would provide layered information so that those with the interest could delve deeper, examining source and support material. It would break out of silos, so that both conventional therapies and NHPs would be represented through one source. It should be international. It would be attuned to demographic profiles within countries, so it would cue you, for instance, to people who have an enhanced metabolic response to certain substances. It would be compatible with electronic medical records systems, or personal health 'smart cards.' It would be anchored in EBM. It would be free. It would include links to professional associations and other resources.
The first step is to identify what needs assessment research has already been done.
Following a needs assessment, steps are to develop and market a strategy. The marketing strategy can be much more effective when informed by the needs assessment.
One or more knowledge transfer strategies should be developed that are informed by the needs analysis and the characteristics of an ideal knowledge transfer system identified previously in this report; they should be built on existing products and strategies where possible.
The strategy or strategies should be marketed according to the principles employed by those already skilled at marketing information with the intent to change behaviour in the identified stakeholder groups (such as the advertising agencies to pharmaceutical companies and federal lobby groups).
Evaluation of the success of any KT strategy was seen as essential. Indicators could include the use of a website (easy to track), increased identification of adverse events in NHPs, decrease in utilization after an advisory was issued (harder to track), polling through Statistics Canada or otherwise to determine if consumers know the meaning of the seal of approval and how many people had used KT sources over a certain period of time. Actual behaviour change was seen as a problematic outcome for a number of reasons; however following up with users to see how they are using the information in relation to their health practices seemed feasible. The ultimate objective is to have KT result in improvements in the health of Canadians.
Various KT sources were mentioned in the discussions. Some of these were:
Such a strategy need not (nor would it optimally) be limited to NHPs; the NHPD does not need to pick up the budget for all of this. Preliminary research (needs analysis) could be funded solely by NHPD or in association with one or more partners, as could pilot projects. Manufacturers were identified as having a role in maintenance and operation of a system, once established. Some potential partners mentioned in the course of discussions were:
Outside Canada:
Manufacturers role in the system would be to bear at least some of the cost, with payment happening in an arms-length way. Participation in the system could offer a marketing opportunity, resulting from their products, or information about their products, bearing a seal of approval. A good system of safety data collection protects them from arbitrary withdrawal of their product based on haphazard reporting of problems and decisions based on sometimes-spurious associations, in the absence of better information.
1 Dr. Alex Jadad ,Director, Program in eHealth Innovation, Centre for Global eHealth Innovation, University Health Network, University of Toronto; Rose Family Chair in Supportive Care Professor, Departments of Anaesthesia, and Health Policy, Management and Evaluation, University of Toronto