Report of the 8th Annual IAIMS Consortium Workshop

Session 3:What information services can we deliver through IAIMS that will improve practice competitiveness by facilitating innovative strategies for health care and wellness?

1. Patient involvement: What models are we using or imagining for supporting patient involvement in health care decision making and practice?
2. Wellness: What models are we using or imagining to achieve, document, and maintain wellness in individuals and populations? What factors must be considered in developing pathways to improve wellness across a region or population?
3. Extending IAIMS: What models are we using or imagining to extend IAIMS to the home/employer/school environment (to support providers and/or health care consumers)?
4. New products: What new products can IAIMS support? (e.g., using data to expedite clinical product testing; creating regional outcomes databases)

• Vanderbilt's HIV/AIDS Information Outreach Project
Jeffrey Huber, Ph.D., Vanderbilt University Medical Center

In 1995, the Eskind Library received a grant from the Southeastern/Atlantic Region, National Network of Libraries of Medicine to conduct an HIV/AIDS information outreach project. This effort sought to increase awareness of HIV/AIDS electronic information resources within the Middle Tennessee region and facilitate access to those resources. In addition, the project strived to promote access to Vanderbilt resources specific to HIV/AIDS. This project was the Library's initial attempt at creating an outreach model. See http://www.mc.vanderbilt.edu/adl/aids_project/.

• Managing Your Health -- A Series of Interactive Discussions Between Academic Healthcare Professionals and Public Audiences via Video Teleconferencing
Steven R. Krogull, M.S., Medical College of Wisconsin

Medical College of Wisconsin physicians are partnering with health care providers from three Wisconsin communities to provide programs where public participants can discuss topics on health maintenance and disease and injury prevention and control. Residents of Cleveland, Watertown, Waupaca and surrounding communities will have the opportunity to participate in the series of two-way interactive video teleconferences. MCW physicians will speak simultaneously to all three community audiences using compressed video teleconferencing (PictureTel over ISDN). Health care providers within each community will facilitate discussion, provide additional content information , promote further local educational efforts, and provide medical and service agency referrals where appropriate. Initial sessions will occur in October and November covering the following topics: Understanding Asthma and Allergies, Coping with Anxiety and Depression, Managing Stress, Living with Back Pain, Controlling Your Blood Pressure, and Maintaining a Healthy Lifestyle.

• An Electronic Consumer Health Information System
Steve Marine, M.L.S., & Roger Guard, M.L.S., University of Cincinnati

The University of Cincinnati Medical Center developed NetWellness, an electronic consumer health library, in direct response to the expressed information needs of the citizens of the region. It includes electronic books, health literature indexes, consumer pamphlets, directories of health professionals and services, Ask an Expert services, and a wealth of other resources. More than forty public computers and several community networks in southern Ohio and the Cincinnati TriState region provide access to NetWellness. Many NetWellness resources are also accessible via the World Wide Web. The U.S. Department of Commerce's National Telecommunications and Information Administration provided seed money to demonstrate the concept in Fall 1994, with the State of Ohio contributing much of the matching funding. Over 35 partners from both the public and private sectors have now contributed to the effort. NetWellness, in its demonstration phase, represents a model for delivering health information directly to consumers in the home and at a variety of public sites.

Because Ohio is a leader in networking state institutions, plans for continuing NetWellness beyond the demonstration include providing access throughout the State via the Ohio Public Library Information Network, and later possibly through networks developed for the public schools and other public institutions. Partnerships with other consumer health/patient education systems marketed directly to health insurers and employers are also under development.

Discussion Group 1 Back to top
Facilitator: Susan Albright
Recorder: Mary Blackwelder
Provided input on question 1.

Recommendation:

Consortium Collaborative Patient Education Initiative
1. Each institution would act as a center of excellence in particular areas and maintain a piece.
2. Content reviewed by a health care professional.
3. Allow local annotation which would include regional practice variations and service provisions.
4. Brand with IAIMS and the local provider.
5. Moderated Chat Group.
Plan of Action:
1. Consensus by the group today that this is worth taking to the Board.
2. Form a subcommittee with potential for representative from each institution.
3. Ad Hoc communication methodology.
4. Will be championed by UIC (Panko) and UCinn (Guard) but will be a shared endeavor. Draft will be done by Dave Krusch and sent to Walt and Roger. Proposal will be sent to Board for discussion at AMIA.
Question 1: Patient Involvement
1. More and more physicians are referring patients to the library for information.
2. Education level of the patient is a factor as well as the language.
3. Some patients still need a mid-level digestion. Not sufficient to simply hand them 5 articles.
4. Is there any evidence that an informed patient has an effect on health care?
5. Should we extend practice guidelines to guidelines for patients--annotated guidelines for patients.
6. Seems to be a feeling among people that my health will have a better outcome if I am informed.
7. In managed care environment, people often do not have as many options in choosing a physician or in getting a second opinion, therefore they want information.
8. Medline is easy to use with all the user-friendly interfaces.
9. Its something they can do, but what happens when they get all these articles. Do they understand them? Does the physician even understand them? Are they worth understanding?
10. Often a textbook with a few paragraphs is much better for the patient than Medline.
11. A comprehensive set of information sources should be developed so that physicians can point their patients to it.
12. It was reported by someone in the group that Hopkins just signed a $30M contract with a managed care organization to provide patient information.
13. The content is the bottleneck and the cost effectiveness.
14. Institutions should not spend a lot of time creating what already exists some place else. There are political issues about pointing a patient to someone elses resources. Need to keep the information local.
15. The Oregon Health Sciences University has a group called Informed Patient Decision Group. They have trouble getting funding. Patient education is something that is not at this point very fundable.
What Can the IAIMS Consortium Do?
1. Is this something that NLM/IAIMS will fund? Will support?
2. The research arm of the government (NIH) is not interested in funding patient information.
3. If local providers, especially academic health care providers, compile the local information--will this be given credit in promotion and tenure? How to tie this effort into promotion and tenure?
4. Can IAIMS Consortium do anything to assure or acquire funding? (No answer was really given for this.)
5. Needs to be a local page that the local provider can tailor.
6. Anything done by the Consortium would have to have the IAIMS brand as well as the local provider brand on it.
7. Someone in the group gave a good example of a situation in which both the patient and the physician wanted information and they could not find (nor could the best Medline searcher in the library) any published data or research. There are times when you need the information and nothing is there.
8. A Chat room for patients was suggested. In this way patients could pose these hard to find questions and see what others had found or save themselves from time and effort searching for stuff that doesn't exist.
9. Chat group would need to be moderated by a health professional.
10. Should IAIMS Consortium do this as a model?

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Discussion Group 2 Back to top
Facilitator: Joyce Niland
Recorder: Linda Cooperstock
Provided input on questions 1,2,3,&4

Question 1: Patient Involvement

1. Kiosks in the center for patients to get immediate information about screening and treatments.
2. Look at ways to reduce cost of care by interacting in their natural environment. Need new ways.
3. Is patient involvement doable?
4. Target behavior modification. Primary care provider monitors, reinforces, shows concern.
Question 2: Wellness
1. Insurance companies do not promote prevention. Encourage insurance companies to promote prevention. Some are giving lesser rates for lower risk behaviors.
2. If we believe people will have Internet connections in the home, how will we use it? How to make it effective? How to motivate the people to use it?
3. Provide filter for the mass of existing health information.
4. Tools to engage the patient to get interested and involved. Disease specific. Interactive.
Question 3: Extending IAIMS
1. IAIMS should facilitate transition from provider-centered approach to a patient-centered approach.
2. Ensure students are aware of what the consumers think is true by pulling information from the range of resources.
3. Redefine role of tertiary care medical center. Partner with community (primary care groups in the state).
4. Provide information such as health reference center. Put information out in the community. Public Library. Patient education. Marketing. Develop standards for information distributed.
5. Partner with public health department.
6. Corporate partners. Have large populations of employees that receive health care.
7. Freenet infrastructure to provide information.
Question 4: New Products
1. Practices will need to produce extra revenues from direct patient care. Try to get the capitated revenue stream from the start. New business: degree to which practices can participate in clinical trials and technology evaluation -- part of product development cycle.
2. Can we develop a cost effective way to meet information need at the point of care? Information professional can answer some questions and make the system more cost effective.
3. Clinical librarians - give time back to the physician.
4. Improve communications with referring physicians; improve efficiency of practice with respect to outcomes and resource utilization.
5. Innovation will be shaped by the economic and organizational conditions.
6. Look at preceptors in the community - education focus. Involve students in bringing value to preceptorships.
7. Patient education marketing evaluation. Are information technologies more cost effective in marketing? Radio spots moving to Internet.
8. There are different populations of patients. Use methods depending on population group (e.g., ability to e-mail physicians).
9. Point of services shared whiteboard. Search expert and subject expert are linked. Use technology tools, use student help. Build macros for search engines. Use tools to streamline the system.

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Discussion Group 3 Back to top
Facilitator & recorder: Brett Boston Provided input on questions 1,2,3,& 4

This summary provided by Rusty Russell:

Key Ideas

1. Several important issues regarding patient/consumer involvement in healthcare decision making require additional study. Among these issues are: the role/effect of literacy levels, identification of optimum ways of providing health information (e.g., brochures, kiosks, workplace), models for shared decision making, and evaluation of skills for patient/consumer decision making.
2. Prevention/wellness should be an important part of care provider education.
3. Information sharing and model development among IAIMS institutions can help focus the use of technology in effective ways.
4. Web technology and access is still not a viable means of obtaining information for everyone. Bridging technologies are needed until the web or its successor is ubiquitous.
Suggested Actions:
1. IAIMS Consortium members can collaborate on model projects to disseminate information effectively -- with emphasis on care provider and patient dialog and patient/consumer-directed inquiry.
2. Research about providing material for varying literacy levels is needed to be able to reach broad populations of patients (e.g., across regions and within a care provider organization).
3. A study of ways to increase emphasis on wellness and prevention in care provider education should be conducted by a group that is led by IAIMS Consortium members.