CME: Examining Information Sharing Preferences

CME: Examining Information Sharing Preferences
Author Information (click to view)

Bradley H. Crotty, MD, MPH

Director, Patient Portals
Associate Program Director, Informatics Training
Division of Clinical Informatics
Beth Israel Deaconess Medical Center

Bradley H. Crotty, MD, MPH, has indicated to Physician’s Weekly that he serves on the advisory board of QURHealth, for which he has stock options. He also reports having financial relationships with companies relating to the healthcare industry that include Apple, Cisco Systems, General Electric, GlaxoSmithKline, IBM, Illumina, and Johnson & Johnson. However, none of these disclosures are relevant to this research.

Figure 1 (click to view)
Target Audience (click to view)

This activity is designed to meet the needs of physicians.

Learning Objectives(click to view)

Upon completion of the educational activity, participants should be able to:

 

  • Discuss the findings of a study that sought to identify how elderly patients (older than 75) and their family caregivers approached sharing of health information.

Method of Participation(click to view)

Statements of credit will be awarded based on the participant reviewing monograph, correctly answer 2 out of 3 questions on the post test, completing and submitting an activity evaluation.  A statement of credit will be available upon completion of an online evaluation/claimed credit form at www.akhcme.com/pwFeb5.  You must participate in the entire activity to receive credit.  If you have questions about this CME/CE activity, please contact AKH Inc. at dcotterman@akhcme.com.

Credit Available(click to view)

AKH

CME Credit Provided by AKH Inc., Advancing Knowledge in Healthcare

Physicians
This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of AKH Inc., Advancing Knowledge in Healthcare and Physician’s Weekly’s.  AKH Inc., Advancing Knowledge in Healthcare is accredited by the ACCME to provide continuing medical education for physicians.

 

AKH Inc., Advancing Knowledge in Healthcare designates this enduring activity for a maximum of 0.5 AMA PRA Category 1 Credit(s)™.  Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Commercial Support(click to view)

There is no commercial support for this activity.

Disclosures(click to view)

It is the policy of AKH Inc. to ensure independence, balance, objectivity, scientific rigor, and integrity in all of its continuing education activities. The author must disclose to the participants any significant relationships with commercial interests whose products or devices may be mentioned in the activity or with the commercial supporter of this continuing education activity. Identified conflicts of interest are resolved by AKH prior to accreditation of the activity and may include any of or combination of the following: attestation to non-commercial content; notification of independent and certified CME/CE expectations; referral to National Author Initiative training; restriction of topic area or content; restriction to discussion of science only; amendment of content to eliminate discussion of device or technique; use of other author for discussion of recommendations; independent review against criteria ensuring evidence support recommendation; moderator review; and peer review.

Disclosure of Unlabeled Use & Investigational Product(click to view)

This educational activity may include discussion of uses of agents that are investigational and/or unapproved by the FDA. Please refer to the official prescribing information for each product for discussion of approved indications, contraindications, and warnings.

Disclaimer(click to view)

This course is designed solely to provide the healthcare professional with information to assist in his/her practice and professional development and is not to be considered a diagnostic tool to replace professional advice or treatment. The course serves as a general guide to the healthcare professional, and therefore, cannot be considered as giving legal, nursing, medical, or other professional advice in specific cases. AKH Inc. specifically disclaim responsibility for any adverse consequences resulting directly or indirectly from information in the course, for undetected error, or through participant’s misunderstanding of the content.

Faculty & Credentials(click to view)

Keith D’Oria, Editorial Director
Discloses no financial relationships with pharmaceutical or medical product manufacturers.
Bradley H. Crotty, MD, MPH
Discloses the following financial relationships with pharmaceutical or medical product manufacturers.
Stockholder:   GlaxoSmithKline; Illumina, Inc.; Johnson & Johnson
AKH and PHYSICIAN WEEKLY’S STAFF/REVIEWERS

Dorothy Caputo, MA, BSN, RN- CE Director of Accreditation
Discloses no financial relationships with pharmaceutical or medical product manufacturers.

AKH planners and reviewers have no relevant financial relationships to disclose.

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Bradley H. Crotty, MD, MPH (click to view)

Bradley H. Crotty, MD, MPH

Director, Patient Portals
Associate Program Director, Informatics Training
Division of Clinical Informatics
Beth Israel Deaconess Medical Center

Bradley H. Crotty, MD, MPH, has indicated to Physician’s Weekly that he serves on the advisory board of QURHealth, for which he has stock options. He also reports having financial relationships with companies relating to the healthcare industry that include Apple, Cisco Systems, General Electric, GlaxoSmithKline, IBM, Illumina, and Johnson & Johnson. However, none of these disclosures are relevant to this research.

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Elderly patients and the people who care for them appear to support medical information sharing, even in light of the potential for unintended consequences. Clinicians should anticipate the need for different levels of information sharing during times of wellness and illness.
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Research has shown that older patients often share control over decision-making and personal health information with family members or friends in order to manage medical care issues. However, it can be challenging for clinicians to balance helping patients and their caregivers work collaboratively to manage health information and decision-making while simultaneously respecting the preferences, privacy, and priorities of patients.

To help patients manage their healthcare, patient portals have been developed that connect patients with their healthcare records and oftentimes directly with their clinicians through secure messaging. While portals can be helpful, they may not account for all privacy preferences and offer little guidance on when patients would like to bring their families or caregivers into the fold.

Examining Attitudes & Needs

In previous research, studies have shown that older patients often want control over the privacy of their health information in electronic medical records, but little is known about how this control relates to family dynamics and the use of patient portals. As reported in  JAMA Internal Medicine, Bradley H. Crotty, MD, MPH, and colleagues sought to identify how elderly patients (older than 75) and their family caregivers approached sharing of health information. “This is an issue that many physicians will encounter, but there has not been much research on the topic,” says Dr. Crotty.

For the study, investigators recruited participants from the Information Sharing Across Generations (InfoSAGE) Living Laboratory. InfoSAGE is an ongoing study of the information needs of elderly patients and families within a network of senior housing in the Massachusetts area. Participants joined one of 10 discussion groups to explore the issues. Group discussions were then analyzed to identify themes about the attitudes and needs for sharing personal health information and how they changed over time.

Consider the Consequences

According to the findings, there was broad support for sharing personal health information with caregivers if it was believed that such actions would be beneficial to the patient. However, there were concerns from elderly patients about autonomy and control, respect for preferences, micromanagement and snooping, and unintended disclosure of information. In general, caregivers were sympathetic to these concerns and wanted patients to keep their privacy as much as possible.

“One of the key themes that emerged from our study is that sharing medical information between patients and families has consequences,” says Dr. Crotty. “Information sharing is more involved that many clinicians may realize.” The study notes that elderly patients and caregivers have different perspectives on what is viewed as the burden of information (Table). Elderly patients also do not want to relinquish control over their medical decisions to their family or caregivers. Another lesson learned from the analysis was that elders did not want to feel like they were being spied on by their family or caregivers.

A Dynamic Issue

The second major theme emerging from the analysis was that control of information sharing is dynamic. “Older patients generally wish to retain control of their medical decisions for as long as possible,” Dr. Crotty says. “It’s important for older patients to maintain their autonomy.” Independent elders in the study were most concerned about giving up control of their health information and decision-making to their children. Elderly patients wanted to actively decide when sharing would be appropriate and avoid situations in which family members could undermine their decisions.

Dr. Crotty says that decision-making and medical information sharing will be different for each case, depending largely on the health and functional status of older patients. “There is no ‘one-size-fits-all’ approach that will be preferred by all patients,” he says. “It’s also important to recognize that the health of elderly patients can change over time. It’s a fluid situation that requires patients and their caregivers to communicate effectively about how information is to be shared and decisions are to be made.”

Assessing Implications

Ultimately, sharing information and control is a negotiation between the elderly patient and caregivers. Patient portals like the one from the InfoSAGE study may not account for all of the permutations and preferences that relate to the individual patient and their family dynamics. “It’s important to include the control of personal health information as a part of our efforts to have conversations about end-of-life preferences,” Dr. Crotty says. He adds that policies and procedures should be developed proactively for shared access in the event that elderly patients become sick or disabled to the point where family involvement is required.

Findings of the study also have important implications for the design of patient portals, according to Dr. Crotty. “Many patient portals are currently not capable of addressing the fluid changes in patient preferences that can occur over time,” he says. “Future patient portals should seek to account for this fluidity and the various information sharing preferences of patients.”

 

Readings & Resources (click to view)

Crotty BH, Walker J, Dierks M, et al. Information sharing preferences of older patients and their families. JAMA Intern Med. 2015 Jul 6 [Epub ahead of print]. Available at: http://archinte.jamanetwork.com/article.aspx?articleid=2363023.

Washington KT, Meadows SE, Elliott SG, Koopman RJ. Information needs of informal caregivers of older adults with chronic health conditions. Patient Educ Couns. 2011;83:37-44.

Hartzler A, Skeels MM, Mukai M, Powell C, Klasnja P, PrattW. Sharing is caring, but not error free: transparency of granular controls for sharing personal health information in social networks. AMIA Annu Symp Proc. 2011;2011:559-568.

Gillick MR. The critical role of caregivers in achieving patient-centered care. JAMA. 2013;310:575-576.

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