Writing about Informatics

My pledge to frequently blog has withered. It is certainly hard to write consistently. In working on behavioral informatics projects, I have realized that projects and the papers that come from them are quite different, and how you manage them must also be different.

Informatics projects are like pets, you have to take care of them. They have to be fed and watered, they like attention often times. But, they often take on a personality of their own and do not like to be pushed too hard. If you do not take care of them, they often have a way of notifying you - they might tear up you slippers or soil the floor.

Papers are different, they are like plants. Papers can sit on the shelf and slowly wither with time, dying a slow, quiet death of neglect. They do not bark or notify you that you are neglecting them. To get writing done, you do need a different approach.

Patient-centered medical home and secure messaging

As technology and technology access continues to advance, I believe that the patient-centered medical may take advantage of new health and behavioral informatics innovations.

Consider the following principles that are sometimes linked to the patient-centered medical home, and examples of how behavioral informatics could help...


Patient-driven
Lots of opportunities here. Behavioral informatics applications have been created to provide patient reported outcomes (see NIH PROMIS) and some on patient reports of care provided. Systems could be further developed to provide decision support based on provider and patient input to facilitate shared decision-making.

Team-based
The patient should be considered a part of the medical team and not the object of action. In this context, applications that increase engagement of patients and families in the system are applicable. Secure messaging systems that allow patients to communicate with the team are an excellent example. A well-researched system in the Comprehensive Health Enhancement Support System (Gustafson, Brennan et al).

Efficient
Many Behavioral Informatics interventions allow asynchronous communication (reducing telephone tag), or provide computer-tailored education. Computer-tailored systems in general have considerable sunk costs, but the marginal costs (per user/patient) are low. Thus, where these systems can effectively offset human resources, efficiency is created.


Comprehensive
Patient-facing technologies can provide adherence and health promotion reminders using patient registries, thus increasing the comprehensiveness of care.

Continuous
Again, web and mobile technology interventions are key to overcoming episodic care.

Coordinated
Patient-centered goals can be communicated to all providers through personal health records, so the all on the team are aprised.


Enhanced communication
All of the above apply here.

Patient facing technology and Meaningful use

The proposed interim rule for meaningful use of health information technology is out. It can be viewed at

http://www.federalregister.gov/OFRUpload/OFRData/2009-31217_PI.pdf

The good news is that the rule includes language related to patient-centered technology (beginning on page 59 of the pdf)

Patient-centered technology

From the Meaningful Use
HIT policy committee priority #2: to engage patients and families in their healthcare (excerpted from the actual rule in quotes below)

"
1. Provide patients and families with timely access to data, knowledge, and tools to make informed decisions and to manage their health
(a disclosure made to a family member or a patient's guardian consistent with Federal and State law may substitute for a disclosure to the patient)


2. Send reminders to patients per patient preference for preventive/follow-up care. Patient preference refers to the patient's choice of delivery method between internet based delivery or delivery not requiring internet access

3. Provide patients with an electronic copy of their health information (including diagnostics test results, problem list, medication lists, allergies) upon request (through personal health records, patient portals, CD, USB)

4. Provide patients with timely electronic access to their health information (including lab results, problem list, medication lists, allergies) within 96 hours of the information being available to the EP.
"

The inclusion of the personal health record/patient portal is very exciting and should be viewed as encouraging to those who conduct research in patient-facing technology.

What is not so encouraging is the exclusion of:

“Provide access to patient-specific education resources upon request.”

The rationale is that "there is currently a paucity of knowledge resources that are integrated within EHRs." The authors of the rule clearly acknowledg the importance of the patient-specific ecucation resources goal. Those involved in the behavioral informatics community should consider commenting on the rule in the next 50 days. Creative solutions to this problem are needed.

Also, no information on doctor-patient secure messaging (electronic communication) is included on my review. I think that this is a critical channel of communication that certainly represents a meaningful use of technology.

Comments are welcome.

Patient experiences

In considering patient experiences with health information technology, I question whether we have a strong enough user voice. Iterative programming and usability testing and agile programming are good, but are they good enough?

User input could be a continuous conversation with a core set of users. Thus, I am advocating for an increased link between informatics for consumer health and community-based participatory research and/or action research methods.

Sorry such a short post.

Patient-facing technology and families

The digital divide is an important issue for patient-facing technologies. I have participated in a number of project addressing informatics for vulnerable populations.

A major advance in both concept and reality is the idea (not new) of surrogate use of health information technology. So, if my 80 year-old grandfather cannot or will not access the Internet at home, his 40 year-old neice that lives in town might. Using a delegation function, grandpa would only have to access the system once, allow access to his trusted neice, and then he has surrogate access.

I think we need more health information technology interventions targeted at families, not individual patients. Acknowledge that using information technology for health is a team sport.

The Pew Internet and American Life project has some excellent data on this issue, I believe.

Informatics for Consumer Health

This excellent conference was in Washington this fall. I highly recommend all interested in behavioral informatics to visit the site.

AMIA year in review lists notable publications

Visit

http://dbmichair.mc.vanderbilt.edu/amia2009/#Notable_Events

To see a list of notable events in the area of informatics

CHI at CiteULike

CiteULike has a group for consumer health informatics

http://www.citeulike.org/rss/group/4765

Wow, I have not posted in 3 years. But, I am not taking the Bog down, as suggested by Dr. Woods. I hope that I will now be able to post more regular.

Resources

These are some resources referenced in our symposium "What is Behavioral Informatics" at the 2005 SBM meeting. We will be posting our full power point slides this week.

Journal of Medical Internet Research: www.jmir.org

Journal of Computer Mediated Communications: http://jcmc.indiana.edu

Robert Wood Johnson Foundation. Health E-Technologies Inititative: www.hetinitiative.org



This is a bibliography that will be used to supplement the symposium "What is Behavioral Informatics" at the 2005 SBM meeting in Boston.

Behavioral Informatics BIBLIOGRAPHY


Counseling



Noell J & Glasgow RE. Interactive technology applications for behavioral counseling: Issues and opportunities for health care settings. Am J Prev Med. 1999;17:269-74.



Measurement & Methods



Ritter P, Lorig K, Lorent D & Matthews K. Internet versus mailed questionnaires: A randomized comparison. Journal of Medical Internet Research (JMIR). 2004;6:e29.



Ademiluyi G, Rees CE & Sheard CE. Evaluating the reliability and validity of three tools to assess the quality of health information on the Internet. Patient Education and Counseling. 2003;50:151-155.



Paul J, Seib R & Prescott T. The internet and clinical trials: Background, online resources, examples and issues. JMIR. 2005;7:e5.



Supple AJ, Aquilino WS & Wright DL. Collecting sensitive self-report data with laptop computers: Impact on the response tendencies of adolescents in a home interview. Journal of Research on Adolescence. 1999;9:467-488.



Gerbert B, Bronstone A, Pantilat S, McPhee S, Allerton M & Moe J. When asked, patients tell: Disclosure of sensitive health-risk behaviors. Medical Care. 1999;37:104-111.



Eysenbach G & Watt J. Using the Internet for surveys and health research. JMIR. 2002;4(2):e13.



Koo M & Skinner H. Challenges of Internet recruitment: A case study with disappointing results. JMIR. 2005;7(1):e6.



Smoking Cessation


Methods


Lee, JH, KU J, Kim K. et al, Experimental application of virtual reality for nicotine craving through cue exposure. Cyberpsychology and Behavior. 2003; 6:275-280.



Intervention Studies


Lenert, L., Munoz, R.F., Stoddard, J., Kelucchi, K., Bansod, A., Skoczen, S., Perez-Stable, E. Design and pilot evaluation of an internet smoking cessation program. J Am Med Inform Assoc. 10:16-20, 2003.


Prochaska, J.O., et al., Standardized, individualized, interactive, and personalized self- help programs for smoking cessation. Health Psychology, 1993. 12(5): p. 399-405.



Observational Studies


Shiffman S, Hickcox M, Paty JA, Gnys M, Richards T & Kassel JD. Individual differences in the context of smoking lapse episodes. Addictive Behaviors, 1997;22:797-811.





Physical Activity


Methods


Granello DH, Wheaton JE. Online data collection: Strategies for research. Journal of Counseling and Development. 2004;82:387-93.

Intervention Studies


Marshall, A.L., Leslie, E.R., Bauman, A.E., Marcus, B.H., Owen, N. Print versus website physical activity programs: A randomized trial. Am J Prev Med 25(2):88-94, 2003.


Napolitano MA, Fotheringham M, Tate D, Sciamanna C, Leslie E, Owen N, Bauman A & Marcus BH. Evaluation of an Internet-based physical activity intervention: A preliminary investigation. Annals of Behavioral Medicine. 2003;25:92-99.


Pinto B, Friedman R, Marcus BH, Kelley H, Tennstedt S, Gillman MW. Effects of a computer-based, telephone counseling system on physical activity. Am J of Prev Med. 2002; 23:113-120.


Bock BC, Marcus BH, Pinto BM, Forsyth LH. Mainenance of physical activity following an individualized, motivationally tailored intervention. Annals of Behavioral Medicine. 2001;23:79-87.



Observational Studies


Laken MA, O’Rourke K, Duffy NG, Swinton R & Jordan J. Use of the Internet for health information among African Americans with modifiable risk factors for cardiovascular disease. Telemedicine Journal and e-Health. 2004;10:304-310.



Review Articles


Doshi A, Patrick K, Sallis JF & Calfas K. Evaluation of physical activity websites use of behavior change theories. Annals of Behavioral Medicine. 2003;25:105-111.


Marshall AL, Owen N, Bauman AE. Mediated approaches for influencing physical activity: update of the evidence on mass media, print, telephone and website delivery of interventions. J Sci Med Sport. 2004 Apr;7(1 Suppl):74-80
Marcus BH, Nigg CR, Riebe D, Forsyth LH. Interactive communication strategies: implications for population-based physical-activity promotion. Am J Prev Med. 2000 Aug;19(2):121-6.
Nutrition/Weight
Intervention Studies
Tate DF, Jackvony EH & Wing RR. Effects of Internet Behavioral Counseling on Weight Loss in Adults at Risk for Type 2 Diabetes: A Randomized Trial. JAMA. 2003;289:1833-1836.
Oenema A, Tan F & Brug J. Short-Term Efficacy of a Web-Based Computer-Tailored Nutrition Intervention: Main Effects and Mediators. Annals of Behavioral Medicine. 2005;29(1): 54-63.
Womble, L.G., Wadden, T.A., McGuckin, B.G., Sargent, S.L., Rothman, R.A., Krauthamer-Ewing, E.S. A randomized controlled trial of a commercial weight loss program. Obesity Research 12(6):1011-1018, 2004

Harvey-Berino J, Pintauro S, Buzzell P & Casey-Gold E. Effect of Internet Support on the Long-Term Maintenance of Weight Loss. Obesity Research. 2004;12:320-329.

Observational Studies
Irvine, A.B., Ary, D.V., Grove, D.A., Gilfillan-Morton, L. The effectiveness of an interactive multimedia program to influence eating habits. Health Education Research 19(3):290-305, 2004.

Disease Management
Doctors may now be reimbursed for their time spent answering email (Milt Freudenheim, NYTimes, 3/2/05)
Friedman, R.H., et al., A telecommunications system for monitoring and counseling patients with hypertension. Impact on medication adherence and blood pressure control. Am J Hypertens, 1996. 9(4 Pt 1): p. 285-92.

Diabetes
Meigs, James, B., Cagliero, E., et. al. A controlled trial of web-based diabetes disease management. The MGH Diabetes Primary Care Improvement Project. Diabetes Care, 26(3):750, 2003.

Medication Compliance
Rosen MI, Rigsby MO, Salahi JT, Ryan CE, Cramer JA. “Electronic monitoring and counseling to improve medication adherence.” Behaviour Research and Therapy 42(4): 409-422, 2004.

Chronic Pain
Lorig, K.R., Laurent, D.D., et. al. Can a back pain e-mail discussion group improve health status and lower health care costs: A randomized study. Arch Intern Med. Ap 8:162(7): 792-6, 2002.

Asthma
Guendelman, S., Meade, K., Benson, M., Chen, Y.Q., Samuels, S. Improving asthma outcomes and self-management behaviors of inner-city children. Arch Pediatr Adolesc Med. 2002;156:114-120.
Ethics
Dyer KA. Ethical challenges of medicine and health on the Internet. JMIR. 2001;3:e23.
Pittenger DJ. Internet Research: An opportunity to revisit classical ethical problems in behavioral research. Ethics and Behavior. 2003;13:45-60.
Keller HE & Lee S. Ethical issues surrounding human participants research using the Internet. Ethics and Behavior. 2003;13:211-219.
Rhodes SD, Bowie DA & Hergenrather KC. Collecting behavioral data using the world wide web: Considerations for Researchers. Journal of Epidemiology and Community Health. 2003;57:68-73.
Sixsmith J & Murray CD. Ethical issues in the documentary data analysis of Internet posts and archives. Qualitative Health Research. 2001;11:423-432.
APA Statement on Services by Telephone, Teleconferencing, and Internet (2001). A statement by the Ethics Committee of the American Psychological Association accessed at: http://www.apa.org/ethics/stmnt01.html
Ethical Principles of Psychologists and Code of Conduct (2002). Accessed at: http://www.apa.org/ethics/code2002.html

Other Topics
Eysenbach, G.; Powell,J.; Englesakis, M.; Rizo,C.; Stern, A. (2004). Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions BMJ. 328(7449), 1166.
McAlearney AS, Schweikhart SB & Medow MA. Doctors' experience with handheld computers in clinical practice: qualitative study. BMJ. 2004 May 15;328(7449):1162
Eysenbach G & Norman C. Introduction to CATCH-IT Reports: Critically appraised topics in communication, health informatics and technology. JMIR. 2004;6:e49.
Oh H, Rizo C, Enkin M & Jadad A. What is eHealth: A systematic review of published definitions. JMIR. 2005;7:e1.

SBM Behavioral Informatics SIG Meeting 2004

The following is a list of issues of interest to SIG members from the 2004 meeting

A. Methods Issues
Issues of Recruitment into studies (How to recruit and follow-up online)

B. Maximizing website “stickiness”

C. Tools
What are the variety of tools and how can they be used?
Biofeedback
PDA’s, what you can and can’t do


D. Clinical Services Integration
Integrating Behavioral Informatics within the “dominant” professional model to augment, substitute, competitive advantages/disadvantages


E. Policy Issues and Fuding
Service across State Lines
NIH-funding agencies