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International collaboration in shared decision-making: The International Shared Decision Making (ISDM) conference history and prospects
Patient Education and Counseling 73 (2008) 402–406 www.elsevier.com/locate/pateducou
International collaboration in shared decision-making: The International Shared Decision Making (ISDM) conference history and prospects§ Margaret Holmes-Rovner * Health Services Research, Michigan State University College of Human Medicine, East Lansing, MI 48823, United States Received 16 January 2008; accepted 31 January 2008
Abstract Objective: Analyze the role of collaboration in the International Shared Decision Making organization (ISDM). Methods: Case study of the seven year history of ISDM as a professional network. Results: The International Shared Decision Making meeting Conference (ISDM) has held four biennial meetings since its inception in 2001. It is a freestanding professional meeting, with no permanent institutional support and no formal governance structure. In both its history and its prospects, collaboration among attendees has been pivotal to its growth. It both attracts and holds its ‘‘members’’ through the strength of the relationships formed during and between meetings. Exchanges in ISDM are informational, collegial, and indirectly economic. Conclusion: ISDM’s future rests on keeping all three functions healthy. It must maintain a focus on putting the shared decision making work first through becoming a ‘‘worknet’’. Technologies that promote shared decision making can then be assembled and developed that support transformation of health care. Practice Implications: Innovative professional organizations need to develop their work through deliberate development of networking techniques to move innovation into practice. # 2008 Published by Elsevier Ireland Ltd. Keywords: Shared decision-making; Patient decision aids; Evidence-based medicine; Communication skills; Professional networks
1. Introduction and history The International Shared Decision Making (ISDM) Conference has held four biennial meetings over 6 years, beginning in 2001. Attendance has grown steadily, from 140 to more than 230 in Freiburg/Germany (2007). The purpose of this essay is to provide a brief history of ISDM and describe some dynamics of its organization. The purpose is to stimulate new relationships that build on its past. The ISDM meeting has been as much about stimulating collaboration as it has been about presenting new research results or methods. This collaboration has produced a new project, the International Patient Decision Aids Standards § Presented in part at the meeting of the Fourth International Shared Decision Making Conference, Freiburg, Germany, 30 May–1 June 2007. * Correspondence address: Center for Ethics and Humanities in the Life Sciences, Michigan State University College of Human Medicine, C203 East Fee Hall, East Lansing, MI 48823, United States. Tel.: +1 517 353 5197; fax: +1 517 353 3289. E-mail address: [email protected].
0738-3991/$ – see front matter # 2008 Published by Elsevier Ireland Ltd. doi:10.1016/j.pec.2008.01.028
(IPDAS) collaboration, and encouraged an implicit question throughout meetings, ‘‘Have we got this Shared DecisionMaking thing right?’’ As a participant, I can recount the early history, leading to the first meeting at St. Catherine’s College, Oxford, in 2001. It reflects the spontaneity and spirit of collaboration that has continued. The occasion to tell this tale came from a conversation in a pub in Ottawa following the third ISDM meeting. Talking with Martin Ha¨rter, who was considering hosting the fourth meeting in Freiburg, about the 1999–2000 buildup to the Oxford meeting, produced a comment. ‘‘Oh, I see’’, he said. ‘‘For you this is not a meeting, it’s a family reunion!’’ Where did an International Shared Decision Making meeting come from? Both intellectual associations and personal associations provide background. The intellectual threads include: (1) ethical standards for informed consent, (2) technology assessment and (3) patient-centered care. The technology assessment background includes both decision analysis and regional variation studies. These topics are well
M. Holmes-Rovner / Patient Education and Counseling 73 (2008) 402–406
described in Evidence Based Patient Choice, the collection of essays edited by Edwards and Elwyn [1]. The shared decision making (SDM) work is part of the evidence-based medicine movement of the 1980s and 1990s, but is focused on providing evidence about medical alternatives to patients and providers in order to improve their decisions. The meetings of the Society for Medical Decision Making and the International Society for Technology Assessment in Health Care (ISTAHC) provided venues for researchers. In 1999, at the ISTAHC meeting in Edinburgh, I seized an opportunity to spend a collective sabbatical in the UK to work on shared decision-making. ISTAHC, 1999, was held in Edinburgh Castle. On the way to ISTAHC, I visited Angela Coulter, then an executive director at the Kings Fund in London, Glyn Elwyn and Adrian Edwards, in Cardiff to explore opportunities to join them in 2000 for a sabbatical. At the ISTAHC meeting, I encountered Annette O’Connor and Hilary Llewellyn-Thomas, whom I had known from meetings of the Society for Medical Decision Making to be key figures in the development of decision aids, and in psychological methods to describe and evaluate patient decision making. I asked if they would be interested in spending a sabbatical to write a book that would summarize the methods that guide shared decision-making and decision aid development. They thought a shared sabbatical was an excellent idea, though none of us knew what form it might take. At the gala dinner in Edinburgh castle, it was easy to find the source of wine, as we marched up and down the stone path in the castle, but not so easy to find the place where haggis and turnips were served. Finally, we located the food in the guard house at the bend of the stone path. On entering, we found a very crowded room. Seeing Angela Coulter, I told her about the idea of a shared sabbatical for the four of us to write a book. She thought it was a good idea and offered the location of her new institute in Oxford, Picker Institute Europe. Annette and Hilary were enthusiastic about the idea of working together in association with Picker and
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the Institute for Health Sciences (IHS). With support from the Nuffield Trust, we established the Shared Decision Making Forum 2000 in Oxford, to develop a training program, update the Cochrane review of decision aids, and address policy change around implementing shared decision-making. Over the first six months of 2000, Hilary Llewellyn-Thomas, Annette O’Connor, Cornelia Ruland, David Rovner, and Margaret Holmes-Rovner were in residence at the Shared Decision Making Forum. We held seminars at the IHS, enjoyed visits from collaborators from Scotland, Wales, academic centers in England, the Netherlands, and the United States. We also became acquainted with pubs and colleges and countryside in and around Oxford. While we did not write a whole book, Adrian Edwards and Glyn Elwyn accepted our offer to write three chapters for their book, Evidence Based Patient Choice [1]. By June 2000, the Shared Decision Making Forum members had prepared the agreed on chapters, as well as articles for the Brit Med J and The Lancet. In addition, the seminars and conversations had extended our thinking and our friendships. At a farewell dinner at a restaurant in Oxford, our self-satisfied sense of a job well-done was challenged by Muir Gray, the Director of the IHS. He indicated that it was fine for five academics to have had an extended conversation with others in Oxford, but that it was not enough. He wanted to know how we planned to expand the conversation. After thinking about that challenge for a day, I concluded that a possible response would be to organize a meeting, and to start a listserv. Inquiries about the possibility of a meeting led us to Theo Schofield, a key organizer of a new organization, the European Association for Communication in Health Care (EACH). He had secured space at St. Catherine’s College, Oxford, for the 2001 inaugural meeting, and could add decision-making to the EACH conference agenda. Subsequent meetings were held in Swansea, Wales in 2003, Ottawa, Canada in 2005, and Freiburg, Germany in 2007. The upcoming 2009 meeting will be in Boston, USA.
Table 1 IPDAS State-of-the-Art Reports Report titlea
Task force convener(s)/first authors
Members/co-authors
Using a systematic development process
Clarke A
Providing information about options
Feldman-Stewart D
Presenting probabilities
Barratt A
Clarifying and expressing values Using personal stories Guiding/coaching in deliberation and communication Disclosing conflicts of interest Delivering decision aids on the Internet Balancing the presentation of options Using plain language
O’Connor A, Llewellyn-Thomas H Butow P Sepucha K
Jacobsen MJ, O’Connor MA, Stilwell D, Feldman-Stewart D Austoker J, Charvet A, Hewitson P, Knight S, Sepucha K, Whelan T Edwards A, Trevena L, McCaffery K, Woloshin S, Bekker H, Timmermans D, Charvet A Dolan J, Kupperman M, Wills C Fowler FJ, Ziebland S Belkora J, Ling B, Davison J
Basing information on up-to-date scientific evidence Establishing effectiveness a
Barry M Ruland C Moumjid N Holmes-Rovner M Whelan T
Hope T, Chan E, Braddock C Frosch D Stacey D, Raffle A, Ozanne E Fagerlin A, McCaffery K, Schwartz L, Sheridan S, Stableford S Pignone M
Entwistle V, Mulley A
O’Connor A, Marteau T, Kennedy A, Sepucha K
Full text of all reports is available on the IPDAS website, http://www.ohri.ipdas.org.
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M. Holmes-Rovner / Patient Education and Counseling 73 (2008) 402–406
2. ISDM meetings and accomplishments The Swansea and Ottawa meetings continued the spirit of collaboration, especially over dinner and in pubs. At the Swansea meeting, a collaborative enterprise was begun that reported out at the Ottawa meeting, the International Patient Decision Aid Standards (IPDAS) collaborative [2]. Following the Swansea meeting, a steering committee of 16 members commissioned 12 state-of-the-art papers on 12 key topics (Table 1). IPDAS used a consensus process to establish best practices for design and content of patient decision aids [3]. Best practices were meant to guide decision aid design and a decision aid quality rating system. Fifty-six author units participated in writing the papers over six months. The papers appear on the IPDAS website, and there have been subsequent papers on key topics: Information Provision [4], Decision Quality [5], Risk Communication [6,7] and Values Clarification [8]. These were subsequently voted on in the modified Delphi process by stakeholder groups of patients, providers, researchers, and policy makers from 14 countries. The resulting criteria, described elsewhere, have yielded a checklist to guide decision aid development [3]. A quality measure is being developed by the IPDASi Measurement Group, comprised of 15 members. In addition to producing the rating tools, the IPDAS process identified research gaps. The proposition that basic research in decision science and cognition supported a set of criteria to be applied to patient decision tools generated debate and discussion with fundamental decision scientists, stimulating development in the field.
webs, open innovation and customer-created content. They have been applied to solving scientific problems by companies. Internet based Moms share information on starting home businesses. Disease focused chat rooms share patient experiences. Some networks last, but many do not. Meyer observes that the key to getting payback on the investment in a network is to be clear about what kind of value participants want out the networks they create. The focus has to be on the work that, in the case of ISDM, is expanding and improving shared decisionmaking. Some ISDM participants have commercial interests in tools for patients (and health professionals) to use. Some have interests in how the tools affect the communication process between patients and providers. Some have interests in how health systems can be restructured to accommodate and support patients’ voices being heard. These are interlocking aspects of an applied project, getting shared decision-making to work in health care. 3.2. How does ISDM rate on Meyer’s basic tasks that worknets can serve? In an essay on Breakthrough Ideas for 2007 [9], Meyer lists five worknet tasks. Networks can scan the horizon for events and patterns with implications for strategies. The special issue of the German Journal for Evidence and Quality in Health Care [10] preceding the Freiburg meeting commissioned authors from each participating country to describe the status of shared decision-making on a series of attributes. That report provided the data for such a scan, though no formal discussion of the implications was undertaken.
3. ISDM functional style: networking as a worknet
3.3. A network can solve problems
To date, ISDM has been an informal association, largely of researchers and developers; few consumers or advocates have attended meetings. Volunteers have led and supported specific tasks as they have arisen. Annette O’Connor and Glyn Elwyn have led IPDAS, supporting the Delphi process and hosting the IPDAS website. Each meeting has been organized by a local group who have obtained meeting support, established the conference agenda, and managed the meeting internally without a secretariat. David Rovner manages the listserv, which is monitored. Participants have carried the ISDM work forward, supplying personnel and resources as needed. ISDM has also been supported by its close ties to two related organizations. EACH has published two special issues of Patient Education and Counseling (PEC) reporting on ISDM meetings. The Society for Medical Decision Making holds the Shared Decision Making Interest Group at its annual meeting, and hosted a symposium in 2006 and published a special issue of Medical Decision Making (MDM) in 2007 on decision aids.
This task requires management. Meyer cites a business strategy of posing problems to a widely dispersed group of scientists. ISDM has done this through the IPDAS process, which posed the problem of identifying attributes of a high quality decision aid. The implementation of the IPDASi rating scale is proceeding through training at meetings and organizations. It is conceivable that the problems of using and improving the IPDASi rating scale might involve the ISMD listserv in a brainstorming and networking process. A network can innovate for its own benefit. This function has been a primary function of the ISDM meetings. This is a venue where researchers and developers can seek new ideas for improving decision support tools, patient–professional clinical encounters, and health system implementation of shared decisionmaking.
3.1. Is ISDM an organization or a network? Networks, as described by Christopher Meyer, are part of an emerging group of concepts, circulating mostly by internet, that have captivated the business world [9]. These include social
3.4. A network can exert influence Like many professional organizations, ISDM has not been particularly influential. Meyer’s example of a network exerting influence is when researchers experiencing errors with the Pentium microprocessor banded together to get Intel to take the issue seriously. Such a process requires a focused effort on a tractable problem. Networks can efficiently allocate resources.
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Meyer cites a company, which uses its network to match marketing and communications professionals with project that need them. Such a process requires an institution with resources to allocate and agreements among participating professionals. ISDM has no financial resources to allocate, beyond the intellectual capital of the listserv. As Meyer notes, since networks perform diverse functions, they require diverse forms. By identifying the most important work that a group wants a network to perform, it can design (or improve on the design) of the ‘‘worknet’’. He also notes that in a well-designed worknet, the benefits being exchanged are not just economic, but also informational and emotional. These three forms of exchange need to be balanced so that the meeting hosts, the project hosts and the network members feel they have made a fair transaction. That balance may vary for members participating for different reasons or having different roles. The spirit of collaboration appears to enhance the emotional and informational exchanges that ISDM provides. The meeting is collegial and energizing. It is highly productive as a forum to share products and opportunities among participants. It is international. At the Freiburg meeting, attendees represented 17 countries. Since most participants are absorbed by their daily work within health systems, it is highly stimulating to come out of the trenches and see what goes on in other countries. ISDM is a vehicle for innovation and problem-solving. However, the projects that have grown from the problem-solving activity have the potential to extend their influence if the power of the ISDM network is directly harnessed. Below are two feasible projects that I feel exemplify the opportunity. 4. ISDM future potential 4.1. Extending IPDAS as a standard IPDAS and IPDASi are moving through the development and validation process through the leadership of Elwyn and O’Connor and the IPDAS Steering Committee. The IPDAS checklist and approach to rating decision support tools have been presented as a workshop at ISDM and SMDM in 2007. This checklist is being used to describe the quality of patient decision aids on the Cochrane Inventory of available patient decision aids [11]. The criteria for judging effectiveness of patient decision aids have been used in updating the Cochrane systematic review of patient decision aids [12]. The IPDASi group is performing reliability and scaling studies to improve its performance. O’Connor’s and Stacy’s work to present IPDAS to the Healthwise and BestTreatments producers of decision support tools provides on-the-ground demonstration of how IPDAS standards can guide the development of new tools in the voluntary health sector, the commercial sector, and the government sector across countries. Mention of the IPDAS standards in the informed choice legislation of Washington State is also promising [13]. The IPDAS standards may help to assure that decision support tools are balanced, display the evidence for all clinically viable options, and engage patient values. To become a more widely used and credible standard, the dissemination effort could recruit members of the
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ISDM network to work in a coordinated fashion across countries and across sectors. In this effort, its purpose would be to allocate human resources efficiently and maintain training standards and to influence the field. It is important, however, to recognize that the IPDAS standards were established through a literature review current to 2003 and a consensus process. To maintain credibility, and to resolve problem areas remaining from the first consensus process, it will be critical to review the IPDAS standards, and the underlying science periodically. 4.2. Integration of ‘‘evidence review’’ into practice communication Shared decision-making, to the extent that it is grounded in evidence-based patient choice, places review of the evidence for and against competing options for screening and treatment in the foreground. It requires that patients and health professionals review evidence together in the clinical encounter. At the 2007 ISDM meeting, there was increased discussion of the importance of patient and clinician communication. However, a specific focus on evidence review remains underdeveloped. Early work in this area shows descriptive evidence that shared decision-making rarely happens in clinical encounters [14–18]. However, an approach and procedure for conducting clinical encounters and training health professionals in a process that elicits the sources of evidence the patient has sought, and inserts a procedure for reviewing the patient’s understanding of evidence into the dialogue remains under-developed. As with the general teaching of communication skills, both teaching and testing these skills as a required competence for graduation or licensure will be important. Widespread implementation should build on existing training programs, and be transferred into practice. The fact that neither patients nor clinicians expect to do evidence review in a routine visit is problematic. Clinicians are in the best position to sort out fact from fiction, relevant from irrelevant. They are also in the position to make sure that all individuals have sufficient basic information about their diseases and treatment to care for themselves on a day-today basis. Patients may be very well-informed about what they think is their condition, and do a lot of searching out information and learning everything they can about their diagnosed or undiagnosed condition or symptoms. On the other hand, many patients do not seek out information, feeling that is the doctor’s job. Both techniques may yield unintended adverse consequences. Whether patients are over-informed or underinformed, the traditional ways that doctors are taught to interact in a clinical encounter does not include reviewing patient information. ‘‘Normal’’ interactions between doctors and patients do not include reviewing medical information, and yet patients are increasingly told they should be informed, and should ask questions about screening and treatment. In addition, this basic educational information review is not something physicians are being trained to do with patients. They often have neither the time nor the confidence to take on this task, particularly when it involves explaining statistical inference and risk. Communication skills teaching, as it
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M. Holmes-Rovner / Patient Education and Counseling 73 (2008) 402–406
currently practiced, allows clinicians to hold a bias against well-informed patients, and sanctions a fear that reviewing information will slow down the workflow and inhibit efficient care provision. Nevertheless, ignoring the need for patients to be informed poses important risks. Misunderstanding about disease and treatment lead to errors in self-care. Patients may not disclose their concerns about the therapies they are considering. Some people whose clinicians discourage questions about research they have done on their own condition simply give up on self-education but are likely to continue to seek, and act upon information, without the guidance by a health professional. To address this gap in the basic framework to support shared decision-making, we have begun a Task Force on Evidence Review in the Clinical Encounter [19]. 4.3. How might the work of these two projects engage the ISDM network? Meyer notes that well-designed networks proceed deliberately to: (1) define the work, (2) identify the talent, (3) engineer the exchanges among the participants, (4) engineer the exchanges and (5) design the experience. Working to capitalize on the power of the network might move shared decisionmaking into a more solid and vibrant reform vehicle. Meyer notes that it is critically important to keep the ultimate goal in mind. In assembling any technology, he warns all to be wary of a mentality that assumes that we can ‘‘build it and they will come’’. Moving shared decision-making ahead requires careful attention to all the technologies involved, be the decision support tools, the IPDAS checklist, an evidence review protocol, specific SDM training programs for health care providers or the choice of the specific tools for networking. Acknowledgement Funded in part by sabbatical support from the Center for the Advancement of Health (CFAH), Washington, DC. References [1] Edwards A, Elwyn G. Evidence-based patient choice: inevitable or impossible?. Oxford, UK: Oxford University Press; 2001. [2] Graham ID, Visser A, O’Connor AM.In: 3rd International Conference on Shared Decision Making – ISDM 2005. Patient Educ Couns 2006;63: 259–402.
[3] Elwyn G, O’Connor A, Stacey D, Volk R, Edwards A, Coulter A, Thomson R, Barratt A, Barry M, Bernstein S, Butow P, Clarke A, Entwistle V, Feldman-Stewart D, Holmes-Rovner M, Llewellyn-Thomas H, Moumjid N, Mulley A, Ruland C, Sepucha K, Sykes A, Whelan T. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. Brit Med J 2006;333:417. [4] Feldman-Stewart D, Brennenstuhl S, McIssac K, Austoker J, Charvet A, Hewitson P, Sepucha K, Whelan T. A systematic review of information in decision aids. Health Expect 2007;10:46–61. [5] Sepucha KR, Fowler Jr FJ, Mulley Jr AG. Policy support for patientcentered care: the need for measurable improvements in decision quality. Health Affair (Millwood) 2004. Suppl. Web Exclusive: VAR54–62. [6] Barratt A, Trevena L, Davey HM, McCaffery K. Use of decision aids to support informed choices about screening. Brit Med J 2004;329: 507–10. [7] Trevena LJ, Davey HM, Barratt A, Butow P, Caldwell P. A systematic review on communicating with patients about evidence. J Eval Clin Pract 2006;12:13–23. [8] O’Connor AM, Stacey D, Tugwell P, Guyatt G. In: DiCenso G, Guyatt G, Ciliska D, editors. Evidence-based nursing: a guide to clinical practice. Toronto: Mosby; 2005. [9] Meyer C. The best networks are really worknets. Harvard Business Review, 2-1-2007: p. 1–33. [10] Ha¨rter M, Loh A, editors. J Evidence Qual Health Care 2007;101. (Special Issue). [11] O’Connor AM. The Ottowa Health Research Institute. http://decisionaid.ohri.ca/AZinvent.php; 2008 [accessed 1-2-08]. [12] O’Connor AM, Stacey D, Barry MJ, Col NF, Eden KB, Entwistle V, Fiset V, Holmes-Rovner M, Khangura S, Llewellyn-Thomas H, Rovner DR. Do patient decision aids meet effectiveness criteria of the international patient decision aid standards collaboration? A systematic review and metaanalysis. Med Decis Making 2007;27:554–74. [13] O’Connor AM, Wennberg JE, Legare F, Llewellyn-Thomas HA, Moulton BW, Sepucha KR, Sodano AG, King JS. Toward the ‘tipping point’: decision aids and informed patient choice. Health Affair (Millwood) 2007;26:716–25. [14] Braddock III CH, Fihn SD, Levinson W, Jonsen AR, Pearlman RA. How doctors and patients discuss routine clinical decisions: informed decision making in the outpatient setting. J Gen Intern Med 1997;12:339–45. [15] Elwyn G, Edwards A, Kinnersley P. Shared decision-making in primary care: the neglected second half of the consultation. Br J Gen Pract 1999;49:477–82. [16] Ha¨rter M, Loh A. Shared decision-making in diverse health care systems. Ger J Evid Qual Health Care 2007;101:203. [17] Loh A, Simon D, Hennig K, Hennig B, Ha¨rter M, Elwyn G. The assessment of depressive patients’ involvement in decision making in audio-taped primary care consultations. Patient Educ Couns 2006;63: 314–8. [18] Loh A, Simon D, Wills CE, Kriston L, Niebling W, Ha¨rter M. The effects of a shared decision-making intervention in primary care of depression: a cluster-randomized controlled trial. Patient Educ Couns 2007;67:324–32. [19] Holmes-Rovner M, Gruman J. Patient engagement proposals. http:// www.cfah.org; 2008.
International collaboration in shared decision-making: The International Shared Decision Making (ISDM) conference history and prospects§ Margaret Holmes-Rovner * Health Services Research, Michigan State University College of Human Medicine, East Lansing, MI 48823, United States Received 16 January 2008; accepted 31 January 2008
Abstract Objective: Analyze the role of collaboration in the International Shared Decision Making organization (ISDM). Methods: Case study of the seven year history of ISDM as a professional network. Results: The International Shared Decision Making meeting Conference (ISDM) has held four biennial meetings since its inception in 2001. It is a freestanding professional meeting, with no permanent institutional support and no formal governance structure. In both its history and its prospects, collaboration among attendees has been pivotal to its growth. It both attracts and holds its ‘‘members’’ through the strength of the relationships formed during and between meetings. Exchanges in ISDM are informational, collegial, and indirectly economic. Conclusion: ISDM’s future rests on keeping all three functions healthy. It must maintain a focus on putting the shared decision making work first through becoming a ‘‘worknet’’. Technologies that promote shared decision making can then be assembled and developed that support transformation of health care. Practice Implications: Innovative professional organizations need to develop their work through deliberate development of networking techniques to move innovation into practice. # 2008 Published by Elsevier Ireland Ltd. Keywords: Shared decision-making; Patient decision aids; Evidence-based medicine; Communication skills; Professional networks
1. Introduction and history The International Shared Decision Making (ISDM) Conference has held four biennial meetings over 6 years, beginning in 2001. Attendance has grown steadily, from 140 to more than 230 in Freiburg/Germany (2007). The purpose of this essay is to provide a brief history of ISDM and describe some dynamics of its organization. The purpose is to stimulate new relationships that build on its past. The ISDM meeting has been as much about stimulating collaboration as it has been about presenting new research results or methods. This collaboration has produced a new project, the International Patient Decision Aids Standards § Presented in part at the meeting of the Fourth International Shared Decision Making Conference, Freiburg, Germany, 30 May–1 June 2007. * Correspondence address: Center for Ethics and Humanities in the Life Sciences, Michigan State University College of Human Medicine, C203 East Fee Hall, East Lansing, MI 48823, United States. Tel.: +1 517 353 5197; fax: +1 517 353 3289. E-mail address: [email protected].
0738-3991/$ – see front matter # 2008 Published by Elsevier Ireland Ltd. doi:10.1016/j.pec.2008.01.028
(IPDAS) collaboration, and encouraged an implicit question throughout meetings, ‘‘Have we got this Shared DecisionMaking thing right?’’ As a participant, I can recount the early history, leading to the first meeting at St. Catherine’s College, Oxford, in 2001. It reflects the spontaneity and spirit of collaboration that has continued. The occasion to tell this tale came from a conversation in a pub in Ottawa following the third ISDM meeting. Talking with Martin Ha¨rter, who was considering hosting the fourth meeting in Freiburg, about the 1999–2000 buildup to the Oxford meeting, produced a comment. ‘‘Oh, I see’’, he said. ‘‘For you this is not a meeting, it’s a family reunion!’’ Where did an International Shared Decision Making meeting come from? Both intellectual associations and personal associations provide background. The intellectual threads include: (1) ethical standards for informed consent, (2) technology assessment and (3) patient-centered care. The technology assessment background includes both decision analysis and regional variation studies. These topics are well
M. Holmes-Rovner / Patient Education and Counseling 73 (2008) 402–406
described in Evidence Based Patient Choice, the collection of essays edited by Edwards and Elwyn [1]. The shared decision making (SDM) work is part of the evidence-based medicine movement of the 1980s and 1990s, but is focused on providing evidence about medical alternatives to patients and providers in order to improve their decisions. The meetings of the Society for Medical Decision Making and the International Society for Technology Assessment in Health Care (ISTAHC) provided venues for researchers. In 1999, at the ISTAHC meeting in Edinburgh, I seized an opportunity to spend a collective sabbatical in the UK to work on shared decision-making. ISTAHC, 1999, was held in Edinburgh Castle. On the way to ISTAHC, I visited Angela Coulter, then an executive director at the Kings Fund in London, Glyn Elwyn and Adrian Edwards, in Cardiff to explore opportunities to join them in 2000 for a sabbatical. At the ISTAHC meeting, I encountered Annette O’Connor and Hilary Llewellyn-Thomas, whom I had known from meetings of the Society for Medical Decision Making to be key figures in the development of decision aids, and in psychological methods to describe and evaluate patient decision making. I asked if they would be interested in spending a sabbatical to write a book that would summarize the methods that guide shared decision-making and decision aid development. They thought a shared sabbatical was an excellent idea, though none of us knew what form it might take. At the gala dinner in Edinburgh castle, it was easy to find the source of wine, as we marched up and down the stone path in the castle, but not so easy to find the place where haggis and turnips were served. Finally, we located the food in the guard house at the bend of the stone path. On entering, we found a very crowded room. Seeing Angela Coulter, I told her about the idea of a shared sabbatical for the four of us to write a book. She thought it was a good idea and offered the location of her new institute in Oxford, Picker Institute Europe. Annette and Hilary were enthusiastic about the idea of working together in association with Picker and
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the Institute for Health Sciences (IHS). With support from the Nuffield Trust, we established the Shared Decision Making Forum 2000 in Oxford, to develop a training program, update the Cochrane review of decision aids, and address policy change around implementing shared decision-making. Over the first six months of 2000, Hilary Llewellyn-Thomas, Annette O’Connor, Cornelia Ruland, David Rovner, and Margaret Holmes-Rovner were in residence at the Shared Decision Making Forum. We held seminars at the IHS, enjoyed visits from collaborators from Scotland, Wales, academic centers in England, the Netherlands, and the United States. We also became acquainted with pubs and colleges and countryside in and around Oxford. While we did not write a whole book, Adrian Edwards and Glyn Elwyn accepted our offer to write three chapters for their book, Evidence Based Patient Choice [1]. By June 2000, the Shared Decision Making Forum members had prepared the agreed on chapters, as well as articles for the Brit Med J and The Lancet. In addition, the seminars and conversations had extended our thinking and our friendships. At a farewell dinner at a restaurant in Oxford, our self-satisfied sense of a job well-done was challenged by Muir Gray, the Director of the IHS. He indicated that it was fine for five academics to have had an extended conversation with others in Oxford, but that it was not enough. He wanted to know how we planned to expand the conversation. After thinking about that challenge for a day, I concluded that a possible response would be to organize a meeting, and to start a listserv. Inquiries about the possibility of a meeting led us to Theo Schofield, a key organizer of a new organization, the European Association for Communication in Health Care (EACH). He had secured space at St. Catherine’s College, Oxford, for the 2001 inaugural meeting, and could add decision-making to the EACH conference agenda. Subsequent meetings were held in Swansea, Wales in 2003, Ottawa, Canada in 2005, and Freiburg, Germany in 2007. The upcoming 2009 meeting will be in Boston, USA.
Table 1 IPDAS State-of-the-Art Reports Report titlea
Task force convener(s)/first authors
Members/co-authors
Using a systematic development process
Clarke A
Providing information about options
Feldman-Stewart D
Presenting probabilities
Barratt A
Clarifying and expressing values Using personal stories Guiding/coaching in deliberation and communication Disclosing conflicts of interest Delivering decision aids on the Internet Balancing the presentation of options Using plain language
O’Connor A, Llewellyn-Thomas H Butow P Sepucha K
Jacobsen MJ, O’Connor MA, Stilwell D, Feldman-Stewart D Austoker J, Charvet A, Hewitson P, Knight S, Sepucha K, Whelan T Edwards A, Trevena L, McCaffery K, Woloshin S, Bekker H, Timmermans D, Charvet A Dolan J, Kupperman M, Wills C Fowler FJ, Ziebland S Belkora J, Ling B, Davison J
Basing information on up-to-date scientific evidence Establishing effectiveness a
Barry M Ruland C Moumjid N Holmes-Rovner M Whelan T
Hope T, Chan E, Braddock C Frosch D Stacey D, Raffle A, Ozanne E Fagerlin A, McCaffery K, Schwartz L, Sheridan S, Stableford S Pignone M
Entwistle V, Mulley A
O’Connor A, Marteau T, Kennedy A, Sepucha K
Full text of all reports is available on the IPDAS website, http://www.ohri.ipdas.org.
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2. ISDM meetings and accomplishments The Swansea and Ottawa meetings continued the spirit of collaboration, especially over dinner and in pubs. At the Swansea meeting, a collaborative enterprise was begun that reported out at the Ottawa meeting, the International Patient Decision Aid Standards (IPDAS) collaborative [2]. Following the Swansea meeting, a steering committee of 16 members commissioned 12 state-of-the-art papers on 12 key topics (Table 1). IPDAS used a consensus process to establish best practices for design and content of patient decision aids [3]. Best practices were meant to guide decision aid design and a decision aid quality rating system. Fifty-six author units participated in writing the papers over six months. The papers appear on the IPDAS website, and there have been subsequent papers on key topics: Information Provision [4], Decision Quality [5], Risk Communication [6,7] and Values Clarification [8]. These were subsequently voted on in the modified Delphi process by stakeholder groups of patients, providers, researchers, and policy makers from 14 countries. The resulting criteria, described elsewhere, have yielded a checklist to guide decision aid development [3]. A quality measure is being developed by the IPDASi Measurement Group, comprised of 15 members. In addition to producing the rating tools, the IPDAS process identified research gaps. The proposition that basic research in decision science and cognition supported a set of criteria to be applied to patient decision tools generated debate and discussion with fundamental decision scientists, stimulating development in the field.
webs, open innovation and customer-created content. They have been applied to solving scientific problems by companies. Internet based Moms share information on starting home businesses. Disease focused chat rooms share patient experiences. Some networks last, but many do not. Meyer observes that the key to getting payback on the investment in a network is to be clear about what kind of value participants want out the networks they create. The focus has to be on the work that, in the case of ISDM, is expanding and improving shared decisionmaking. Some ISDM participants have commercial interests in tools for patients (and health professionals) to use. Some have interests in how the tools affect the communication process between patients and providers. Some have interests in how health systems can be restructured to accommodate and support patients’ voices being heard. These are interlocking aspects of an applied project, getting shared decision-making to work in health care. 3.2. How does ISDM rate on Meyer’s basic tasks that worknets can serve? In an essay on Breakthrough Ideas for 2007 [9], Meyer lists five worknet tasks. Networks can scan the horizon for events and patterns with implications for strategies. The special issue of the German Journal for Evidence and Quality in Health Care [10] preceding the Freiburg meeting commissioned authors from each participating country to describe the status of shared decision-making on a series of attributes. That report provided the data for such a scan, though no formal discussion of the implications was undertaken.
3. ISDM functional style: networking as a worknet
3.3. A network can solve problems
To date, ISDM has been an informal association, largely of researchers and developers; few consumers or advocates have attended meetings. Volunteers have led and supported specific tasks as they have arisen. Annette O’Connor and Glyn Elwyn have led IPDAS, supporting the Delphi process and hosting the IPDAS website. Each meeting has been organized by a local group who have obtained meeting support, established the conference agenda, and managed the meeting internally without a secretariat. David Rovner manages the listserv, which is monitored. Participants have carried the ISDM work forward, supplying personnel and resources as needed. ISDM has also been supported by its close ties to two related organizations. EACH has published two special issues of Patient Education and Counseling (PEC) reporting on ISDM meetings. The Society for Medical Decision Making holds the Shared Decision Making Interest Group at its annual meeting, and hosted a symposium in 2006 and published a special issue of Medical Decision Making (MDM) in 2007 on decision aids.
This task requires management. Meyer cites a business strategy of posing problems to a widely dispersed group of scientists. ISDM has done this through the IPDAS process, which posed the problem of identifying attributes of a high quality decision aid. The implementation of the IPDASi rating scale is proceeding through training at meetings and organizations. It is conceivable that the problems of using and improving the IPDASi rating scale might involve the ISMD listserv in a brainstorming and networking process. A network can innovate for its own benefit. This function has been a primary function of the ISDM meetings. This is a venue where researchers and developers can seek new ideas for improving decision support tools, patient–professional clinical encounters, and health system implementation of shared decisionmaking.
3.1. Is ISDM an organization or a network? Networks, as described by Christopher Meyer, are part of an emerging group of concepts, circulating mostly by internet, that have captivated the business world [9]. These include social
3.4. A network can exert influence Like many professional organizations, ISDM has not been particularly influential. Meyer’s example of a network exerting influence is when researchers experiencing errors with the Pentium microprocessor banded together to get Intel to take the issue seriously. Such a process requires a focused effort on a tractable problem. Networks can efficiently allocate resources.
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Meyer cites a company, which uses its network to match marketing and communications professionals with project that need them. Such a process requires an institution with resources to allocate and agreements among participating professionals. ISDM has no financial resources to allocate, beyond the intellectual capital of the listserv. As Meyer notes, since networks perform diverse functions, they require diverse forms. By identifying the most important work that a group wants a network to perform, it can design (or improve on the design) of the ‘‘worknet’’. He also notes that in a well-designed worknet, the benefits being exchanged are not just economic, but also informational and emotional. These three forms of exchange need to be balanced so that the meeting hosts, the project hosts and the network members feel they have made a fair transaction. That balance may vary for members participating for different reasons or having different roles. The spirit of collaboration appears to enhance the emotional and informational exchanges that ISDM provides. The meeting is collegial and energizing. It is highly productive as a forum to share products and opportunities among participants. It is international. At the Freiburg meeting, attendees represented 17 countries. Since most participants are absorbed by their daily work within health systems, it is highly stimulating to come out of the trenches and see what goes on in other countries. ISDM is a vehicle for innovation and problem-solving. However, the projects that have grown from the problem-solving activity have the potential to extend their influence if the power of the ISDM network is directly harnessed. Below are two feasible projects that I feel exemplify the opportunity. 4. ISDM future potential 4.1. Extending IPDAS as a standard IPDAS and IPDASi are moving through the development and validation process through the leadership of Elwyn and O’Connor and the IPDAS Steering Committee. The IPDAS checklist and approach to rating decision support tools have been presented as a workshop at ISDM and SMDM in 2007. This checklist is being used to describe the quality of patient decision aids on the Cochrane Inventory of available patient decision aids [11]. The criteria for judging effectiveness of patient decision aids have been used in updating the Cochrane systematic review of patient decision aids [12]. The IPDASi group is performing reliability and scaling studies to improve its performance. O’Connor’s and Stacy’s work to present IPDAS to the Healthwise and BestTreatments producers of decision support tools provides on-the-ground demonstration of how IPDAS standards can guide the development of new tools in the voluntary health sector, the commercial sector, and the government sector across countries. Mention of the IPDAS standards in the informed choice legislation of Washington State is also promising [13]. The IPDAS standards may help to assure that decision support tools are balanced, display the evidence for all clinically viable options, and engage patient values. To become a more widely used and credible standard, the dissemination effort could recruit members of the
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ISDM network to work in a coordinated fashion across countries and across sectors. In this effort, its purpose would be to allocate human resources efficiently and maintain training standards and to influence the field. It is important, however, to recognize that the IPDAS standards were established through a literature review current to 2003 and a consensus process. To maintain credibility, and to resolve problem areas remaining from the first consensus process, it will be critical to review the IPDAS standards, and the underlying science periodically. 4.2. Integration of ‘‘evidence review’’ into practice communication Shared decision-making, to the extent that it is grounded in evidence-based patient choice, places review of the evidence for and against competing options for screening and treatment in the foreground. It requires that patients and health professionals review evidence together in the clinical encounter. At the 2007 ISDM meeting, there was increased discussion of the importance of patient and clinician communication. However, a specific focus on evidence review remains underdeveloped. Early work in this area shows descriptive evidence that shared decision-making rarely happens in clinical encounters [14–18]. However, an approach and procedure for conducting clinical encounters and training health professionals in a process that elicits the sources of evidence the patient has sought, and inserts a procedure for reviewing the patient’s understanding of evidence into the dialogue remains under-developed. As with the general teaching of communication skills, both teaching and testing these skills as a required competence for graduation or licensure will be important. Widespread implementation should build on existing training programs, and be transferred into practice. The fact that neither patients nor clinicians expect to do evidence review in a routine visit is problematic. Clinicians are in the best position to sort out fact from fiction, relevant from irrelevant. They are also in the position to make sure that all individuals have sufficient basic information about their diseases and treatment to care for themselves on a day-today basis. Patients may be very well-informed about what they think is their condition, and do a lot of searching out information and learning everything they can about their diagnosed or undiagnosed condition or symptoms. On the other hand, many patients do not seek out information, feeling that is the doctor’s job. Both techniques may yield unintended adverse consequences. Whether patients are over-informed or underinformed, the traditional ways that doctors are taught to interact in a clinical encounter does not include reviewing patient information. ‘‘Normal’’ interactions between doctors and patients do not include reviewing medical information, and yet patients are increasingly told they should be informed, and should ask questions about screening and treatment. In addition, this basic educational information review is not something physicians are being trained to do with patients. They often have neither the time nor the confidence to take on this task, particularly when it involves explaining statistical inference and risk. Communication skills teaching, as it
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currently practiced, allows clinicians to hold a bias against well-informed patients, and sanctions a fear that reviewing information will slow down the workflow and inhibit efficient care provision. Nevertheless, ignoring the need for patients to be informed poses important risks. Misunderstanding about disease and treatment lead to errors in self-care. Patients may not disclose their concerns about the therapies they are considering. Some people whose clinicians discourage questions about research they have done on their own condition simply give up on self-education but are likely to continue to seek, and act upon information, without the guidance by a health professional. To address this gap in the basic framework to support shared decision-making, we have begun a Task Force on Evidence Review in the Clinical Encounter [19]. 4.3. How might the work of these two projects engage the ISDM network? Meyer notes that well-designed networks proceed deliberately to: (1) define the work, (2) identify the talent, (3) engineer the exchanges among the participants, (4) engineer the exchanges and (5) design the experience. Working to capitalize on the power of the network might move shared decisionmaking into a more solid and vibrant reform vehicle. Meyer notes that it is critically important to keep the ultimate goal in mind. In assembling any technology, he warns all to be wary of a mentality that assumes that we can ‘‘build it and they will come’’. Moving shared decision-making ahead requires careful attention to all the technologies involved, be the decision support tools, the IPDAS checklist, an evidence review protocol, specific SDM training programs for health care providers or the choice of the specific tools for networking. Acknowledgement Funded in part by sabbatical support from the Center for the Advancement of Health (CFAH), Washington, DC. References [1] Edwards A, Elwyn G. Evidence-based patient choice: inevitable or impossible?. Oxford, UK: Oxford University Press; 2001. [2] Graham ID, Visser A, O’Connor AM.In: 3rd International Conference on Shared Decision Making – ISDM 2005. Patient Educ Couns 2006;63: 259–402.
[3] Elwyn G, O’Connor A, Stacey D, Volk R, Edwards A, Coulter A, Thomson R, Barratt A, Barry M, Bernstein S, Butow P, Clarke A, Entwistle V, Feldman-Stewart D, Holmes-Rovner M, Llewellyn-Thomas H, Moumjid N, Mulley A, Ruland C, Sepucha K, Sykes A, Whelan T. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. Brit Med J 2006;333:417. [4] Feldman-Stewart D, Brennenstuhl S, McIssac K, Austoker J, Charvet A, Hewitson P, Sepucha K, Whelan T. A systematic review of information in decision aids. Health Expect 2007;10:46–61. [5] Sepucha KR, Fowler Jr FJ, Mulley Jr AG. Policy support for patientcentered care: the need for measurable improvements in decision quality. Health Affair (Millwood) 2004. Suppl. Web Exclusive: VAR54–62. [6] Barratt A, Trevena L, Davey HM, McCaffery K. Use of decision aids to support informed choices about screening. Brit Med J 2004;329: 507–10. [7] Trevena LJ, Davey HM, Barratt A, Butow P, Caldwell P. A systematic review on communicating with patients about evidence. J Eval Clin Pract 2006;12:13–23. [8] O’Connor AM, Stacey D, Tugwell P, Guyatt G. In: DiCenso G, Guyatt G, Ciliska D, editors. Evidence-based nursing: a guide to clinical practice. Toronto: Mosby; 2005. [9] Meyer C. The best networks are really worknets. Harvard Business Review, 2-1-2007: p. 1–33. [10] Ha¨rter M, Loh A, editors. J Evidence Qual Health Care 2007;101. (Special Issue). [11] O’Connor AM. The Ottowa Health Research Institute. http://decisionaid.ohri.ca/AZinvent.php; 2008 [accessed 1-2-08]. [12] O’Connor AM, Stacey D, Barry MJ, Col NF, Eden KB, Entwistle V, Fiset V, Holmes-Rovner M, Khangura S, Llewellyn-Thomas H, Rovner DR. Do patient decision aids meet effectiveness criteria of the international patient decision aid standards collaboration? A systematic review and metaanalysis. Med Decis Making 2007;27:554–74. [13] O’Connor AM, Wennberg JE, Legare F, Llewellyn-Thomas HA, Moulton BW, Sepucha KR, Sodano AG, King JS. Toward the ‘tipping point’: decision aids and informed patient choice. Health Affair (Millwood) 2007;26:716–25. [14] Braddock III CH, Fihn SD, Levinson W, Jonsen AR, Pearlman RA. How doctors and patients discuss routine clinical decisions: informed decision making in the outpatient setting. J Gen Intern Med 1997;12:339–45. [15] Elwyn G, Edwards A, Kinnersley P. Shared decision-making in primary care: the neglected second half of the consultation. Br J Gen Pract 1999;49:477–82. [16] Ha¨rter M, Loh A. Shared decision-making in diverse health care systems. Ger J Evid Qual Health Care 2007;101:203. [17] Loh A, Simon D, Hennig K, Hennig B, Ha¨rter M, Elwyn G. The assessment of depressive patients’ involvement in decision making in audio-taped primary care consultations. Patient Educ Couns 2006;63: 314–8. [18] Loh A, Simon D, Wills CE, Kriston L, Niebling W, Ha¨rter M. The effects of a shared decision-making intervention in primary care of depression: a cluster-randomized controlled trial. Patient Educ Couns 2007;67:324–32. [19] Holmes-Rovner M, Gruman J. Patient engagement proposals. http:// www.cfah.org; 2008.