Patient informaticians: Turning patient voice into patient action

Petersen, Carolyn

doi:10.1093/jamiaopen/ooy014

Cited by 14 publications

(8 citation statements)

References 42 publications

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“…There are few examples in the literature about meaningful engagement throughout the research process and how study protocols, processes, and outputs can significantly change after collaboration with community members and relevant stakeholders. Petersen [ 55 ] advocates for patient informaticians who proactively develop and implement technologies for better management of health and lifestyle. With the growth of participatory medicine [ 56 ] and shared decision-making, this review is timely and makes a contribution by highlighting the state of community-engaged research within the health information technology literature.…”

Section: Discussionmentioning

confidence: 99%

Intersection of Health Informatics Tools and Community Engagement in Health-Related Research to Reduce Health Inequities: Scoping Review

Rajamani¹,

Espinosa²,

Rosas³

2021

J Particip Med

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Background The exponential growth of health information technology has the potential to facilitate community engagement in research. However, little is known about the use of health information technology in community-engaged research, such as which types of health information technology are used, which populations are engaged, and what are the research outcomes. Objective The objectives of this scoping review were to examine studies that used health information technology for community engagement and to assess (1) the types of populations, (2) community engagement strategies, (3) types of health information technology tools, and (4) outcomes of interest. Methods We searched PubMed and PCORI Literature Explorer using terms related to health information technology, health informatics, community engagement, and stakeholder involvement. This search process yielded 967 papers for screening. After inclusion and exclusion criteria were applied, a total of 37 papers were analyzed for key themes and for approaches relevant to health information technology and community engagement research. Results This analysis revealed that the communities engaged were generally underrepresented populations in health-related research, including racial or ethnic minority communities such as Black/African American, American Indian/Alaska Native, Latino ethnicity, and communities from low socioeconomic backgrounds. The studies focused on various age groups, ranging from preschoolers to older adults. The studies were also geographically spread across the United States and the world. Community engagement strategies included collaborative development of health information technology tools and partnerships to promote use (encompassing collaborative development, use of community advisory boards, and focus groups for eliciting information needs) and use of health information technology to engage communities in research (eg, through citizen science). The types of technology varied across studies, with mobile or tablet-based apps being the most common platform. Outcomes measured included eliciting user needs and requirements, assessing health information technology tools and prototypes with participants, measuring knowledge, and advocating for community change. Conclusions This study illustrates the current landscape at the intersection of health information technology tools and community-engaged research approaches. It highlights studies in which various community-engaged research approaches were used to design culturally centered health information technology tools, to promote health information technology uptake, or for engagement in health research and advocacy. Our findings can serve as a platform for generating future research upon which to expand the scope of health information technology tools and their use for meaningful stakeholder engagement. Studies that incorporate community context and needs have a greater chance of cocreating culturally centered health information technology tools and better knowledge to promote action and improve health outcomes.

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Section: Discussionmentioning

confidence: 99%

Intersection of Health Informatics Tools and Community Engagement in Health-Related Research to Reduce Health Inequities: Scoping Review

Rajamani¹,

Espinosa²,

Rosas³

2021

J Particip Med

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“…Common diseases may become stratified into successively smaller cohorts, each with distinctive clinical courses demanding distinctive treatments (what has been deemed salami-slicing ) [33]. In this context, alliances between physicians and “patient-driven information economies” driven by patient informaticians may present the best opportunities for clinical care in rare and common conditions alike [34, 35].…”

Section: Discussionmentioning

confidence: 99%

Orthopaedic phenotyping of NGLY1 deficiency using an international, family-led disease registry

Cahan

Frick

2019

Orphanet J Rare Dis

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Background NGLY1 deficiency is a rare autosomal recessive disorder caused by loss in enzymatic function of NGLY1, a peptide N -glycanase that has been shown to play a role in endoplasmic reticulum associated degradation (ERAD). ERAD dysfunction has been implicated in other well-described proteinopathies, such as Alzheimer’s disease, Parkinson’s disease, and Huntington’s disease. The classical clinical tetrad includes developmental delay, hypolacrima, transiently elevated transaminases, and hyperkinetic movement disorders. The musculoskeletal system is also commonly affected, but the orthopaedic phenotype has been incompletely characterized. Best practices for orthopaedic clinical care have not been elucidated and considerable variability has resulted from this lack of evidence base. Our study surveyed patients enrolled in an international registry for NGLY1 deficiency in order to characterize the orthopaedic manifestations, sequelae, and management. Results Our findings, encompassing the largest cohort for NGLY1 deficiency to date, detail levels of motor milestone achievement; physical exam findings; fracture rates/distribution; frequency of motor skill regression; non-pharmacologic and non-procedural interventions; pharmacologic therapies; and procedural interventions experienced by 29 participants. Regarding the orthopaedic phenotype, at time of survey response, we found that over 40% of patients experienced motor skill regression from their peak. Over 80% of patients had at least one orthopaedic diagnosis, and nearly two-thirds of the total had two or more. More than half of patients older than 6 years had sustained a fracture. Related to orthopaedic non-medical management, we found that 93 and 79% of patients had utilized physical therapy and non-operative orthoses, respectively. In turn, the vast majority took at least one medication (including for bone health and antispasmodic therapy). Finally, nearly half of patients had undergone an invasive procedure. Of those older than 6 years, two-thirds had one or more procedures. Stratification of these analyses by sex revealed distinctive differences in disease natural history and clinical management course. Conclusions These findings describing the orthopaedic natural history and standard of care in patients with NGLY1 deficiency can facilitate diagnosis, inform prognosis, and guide treatment recommendations in an evidence-based manner. Furthermore, the methodology is notable for its partnership with a disease-specific advocacy organization and may be generalizable to other rare disease populations. This study fills a void in the existing literature for this population and this methodology offers a precedent upon which future studies for rare diseases can build.

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“…Similarly, academic studies have involved patients in specific stages of health IT projects, such as the usability testing or the implementation of an inpatient portal and not necessarily throughout all stages of the health IT life cycle. An article by Petersen articulated that despite patients being actively involved in conducting research, patients are often not involved with setting the research agenda, evaluating results, or discussing next steps [20]. Similarly, there is limited evidence reporting or evaluating engagement strategies across multiple phases of a health IT project.…”

Section: Discussionmentioning

confidence: 99%

“…Engaging patients and family members in decision making related to health services is not a new concept [19]. In fact, patients have engaged with health care organizations in many ways for several years now, such as advising health care institutions about health service delivery and patient-oriented health research [20]. In the United States, the Patient-Centered Outcomes Research Institute has advocated and funded the engagement of patients in many research initiatives [21].…”

Section: Introductionmentioning

confidence: 99%

Using Patient and Family Engagement Strategies to Improve Outcomes of Health Information Technology Initiatives: Scoping Review

Leung¹,

Lu-McLean²,

Booth³

et al. 2019

J Med Internet Res

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Background Many health care organizations around the world have implemented health information technologies (ITs) to enhance health service efficiency, effectiveness, and safety. Studies have demonstrated that promising outcomes of health IT initiatives can be obtained when patients and family members participate and engage in the adoption, use, and evaluation of these technologies. Despite knowing this, there is a lack of health care organizations using patient and family engagement strategies to enhance the use and adoption of health ITs, specifically. Objective This study aimed to answer the following three research questions (RQs): (1) what current frameworks or theories have been used to guide patient and family engagement in health IT adoption, use, implementation, selection, and evaluation?, (2) what studies have been done on patient and family engagement strategies in health IT adoption, use, implementation, selection, and evaluation?, and (3) what patient and family engagement frameworks, studies, or resources identified in the literature can be applied to health IT adoption, use, implementation, selection, and evaluation? Methods This scoping review used a five-step framework developed by Arksey and O’Malley and adapted by Levac et al. These steps include the following: (1) identifying the RQ, (2) identifying relevant studies, (3) selecting studies, (4) charting relevant data, and (5) summarizing and reporting the result. Retrieved academic and grey literature records were evaluated using a literature review software based on inclusion and exclusion criteria by two independent reviewers. If consensus was not achieved, two reviewers would resolve conflicts by discussion. Research findings and strategies were extracted from the studies and summarized in data tables. Results A total of 35 academic articles and 23 gray literature documents met the inclusion criteria. In total, 20 of the 35 included studies have been published since 2017. Frameworks found include the patient engagement framework developed by Healthcare Information and Management Systems Society and the patient and family engagement framework proposed by Carman et al. Effective strategies include providing patients with clear expectations and responsibilities and providing reimbursement for time and travel. The gray literature sources outlined key considerations for planning and supporting engagement initiatives such as providing patients with professional development opportunities, and embedding patients in existing governance structures. Conclusions Several studies have reported their findings regarding successful strategies to engage patients and family members in health IT initiatives and the positive impact that can emerge when patients and family members are engaged in such initiatives in an effective manner. Currently, no framework has consolidated all of the key strategies and considerations that were found in this review to guide health care organizations when engaging patients and family members in a health IT–specific project or initiative. Further research to evaluate and validate the existing strategies would be of value.

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Patient informaticians: Turning patient voice into patient action

Cited by 14 publications

References 42 publications

Intersection of Health Informatics Tools and Community Engagement in Health-Related Research to Reduce Health Inequities: Scoping Review

Intersection of Health Informatics Tools and Community Engagement in Health-Related Research to Reduce Health Inequities: Scoping Review

Orthopaedic phenotyping of NGLY1 deficiency using an international, family-led disease registry

Using Patient and Family Engagement Strategies to Improve Outcomes of Health Information Technology Initiatives: Scoping Review

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