Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

Compared to traditional care approaches; how does doctor outreach, education, and support via internet networking technologies (such as Facebook, Twitter, and email) affect outcomes such as adherence to treatment program, symptom alleviation, and doctor and patient satisfaction for patients with rare diseases OR from rural communities OR those who are generally healthy and technologically savvy OR those with generally well-controlled chronic conditions?

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

Comparing standard patient care approach (occasional, scheduled in-office visits) to standard care plus recurrent, as-needed internet communication through secure email and/or sites such as Facebook and Twitter for non-emergency communication, encouragement, and education.

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

Populations include:

• Generally healthy and technologically proficient men and women in need of only intermittent care for prescription refills, questions, etc.
• Those with generally well-controlled chronic conditions such as diabetes, asthma, obsessive-compulsive disorder, or history of substance abuse
• Adults with rare diseases and behaviorally based treatment plans from which community support might help (such as Buerger’s disease as mentioned in the article linked to below)
• Adults from rural communities for whom frequent doctor visits or access to community support is limited

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

Patients with less severe chronic diagnoses and/or behavior-based treatment plans.

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

Health-related benefits might include:

• Improved patient and clinician satisfaction with relationship/time commitment/information levels
• Improved patient adherence to prescribed treatment plan
• Improved health outcomes
• Increased patient knowledge and management of own condition

Describe any health-related risks, side effects, or harms that you are concerned about.

From intervention:

• Clinician frustration with additional time/change to practice
• HIPAA/privacy issues

From lack of intervention:

• Patient isolation/lack of improvement due to insufficient communication/support
• Clinician frustration at over-scheduling
• Information gap regarding best-practice

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

yes

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

• Arthritis and nontraumatic joint disorders
• Cardiovascular disease, including stroke and hypertension
• Depression and other mental health disorders
• Developmental delays, attention-deficit hyperactivity disorder, and autism
• Diabetes mellitus
• Functional limitations and disability
• Infectious diseases, including HIV/AIDS
• Obesity
• Peptic ulcer disease and dyspepsia
• Pulmonary disease/asthma
• Substance abuse

AHRQ Priority Populations

• Low income groups
• Minority groups
• Women
• Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care

Federal Health Care Program

• Medicaid
• Medicare

Importance

Describe why this topic is important.

This topic is receiving media attention as new technologies emerge, but there isn’t systematic research yet on what actually works. Patients often complain about a lack of doctor empathy and attention, and doctors are stressed for time. Doctor use of new technologies could allow more frequent and personal communications while actually decreasing time spent in the office and attached costs to patients and insurers (including Medicare and Medicaid). New communications could particularly help those patients who need it most, such as those isolated by geography or condition. Social support has proved useful in improving patient health and new technologies could offer alternative support for those unable to get it more traditionally. Networks created through technology could also provide natural patient registries for analysis and future research.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

I read an article (http://www.nytimes.com/2009/06/11/health/11chen.html) talking about a patient with a rare disease who had difficulty staying motivated to stick to his treatment plan without frequent doctor support. His physician realized that simply by texting words of encouragement or Tweeting, the patient seemed more motivated to stick to the treatment plan. The doctor also talked about other instances where this kind of intervention could be useful. The article suggested that this kind of anecdote is common, but the evidence is not formalized yet.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

yes

If yes, please explain:

Yes. Communities, payers, and clinicians have been uncertain about the use of other similar technologies. These technologies, such as tele-medicine, have received wide variation in implementation, payment, etc. and there is uncertainty over what patient care program works best. As the availability of new technologies increases, so does the variation and uncertainty. Research on this topic could answer questions about how to communicate with patients, when to cover office visits, and when internet-based communications can help.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

Research might change the way clinicians practice- they could decide how to best communicate with patients. Patients might also gain valuable tools to connect with their doctors or others with their condition in a more convenient, timely manner.

Describe the timeframe in which an answer to your question is needed.

Soon. The technology is here and continues to change.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

People in rural communities or with rare diseases often do not have the same access to doctors or support groups that those in more populated settings or with more common conditions have. Using technology, artificial health communities could be created and outreach to less accessible patients would be improved.

Nominator Information

Other Information About You: (optional)

Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

Research might change the way clinicians practice- they could decide how to best communicate with patients. Patients might also gain valuable tools to connect with their doctors or others with their condition in a more convenient, timely manner.

Are you making a suggestion as an individual or on behalf of an organization?

Individual

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