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Active patient participation in the development of an online intervention.

van Bruinessen IR, van Weel-Baumgarten EM, Snippe HW, Gouw H, Zijlstra JM, van Dulmen S - JMIR Res Protoc (2014)

Bottom Line: Delivering such supportive interventions online can have potential benefits in terms of accessibility, cost-effectiveness, and ability to tailor information to personal needs.Early involvement, involvement on different levels, and flexibility in terms of planning and setup seem to be preconditions to creating a bottom-up inspired development procedure with (seriously ill) patients.Further research is necessary to find out if a more patient-centered approach improves the implementation and uptake of eHealth interventions.

View Article: PubMed Central - HTML - PubMed

Affiliation: NIVEL (Netherlands Institute for Health Services Research), Utrecht, Netherlands. i.vanbruinessen@nivel.nl.

ABSTRACT

Background: An important and challenging part of living with cancer relates to the repeated visits to the hospital. Since how patients cope between these post-diagnostic visits depends partly on the information and support received from their physician during the visits, it is important to make the most of them. Recent findings reinforce the importance of training not only the health care professionals in communication skills, but providing patients with support in communication as well. Delivering such supportive interventions online can have potential benefits in terms of accessibility, cost-effectiveness, and ability to tailor information to personal needs. However, problems with attrition (dropout, non-usage) during the test phase and poor uptake after implementation are frequently reported. The marginal level of engagement of the patient as end user seems to play a role in this. Therefore, recent research suggests integrating theory-based development methods with methods that promote involvement of the patient at an early stage. This paper describes a participatory protocol, used to let patients guide a theory-informed development process.

Objective: The objective of this project was to apply a bottom-up inspired procedure to develop a patient-centered intervention with corresponding evaluation and implementation plan.

Methods: The applied development protocol was based on the intervention mapping framework, combined with patient participatory methods that were inspired by the participation ladder and user-centred design methods.

Results: The applied protocol led to a self-directed online communication intervention aimed at helping patients gain control during their communications with health care professionals. It also led to an evaluation plan and an implementation plan. The protocol enabled the continuous involvement of patient research partners and the partial involvement of patient service users, which led to valuable insights and improvements.

Conclusions: The applied protocol realized patient participation on different levels throughout the entire project. Early involvement, involvement on different levels, and flexibility in terms of planning and setup seem to be preconditions to creating a bottom-up inspired development procedure with (seriously ill) patients. Further research is necessary to find out if a more patient-centered approach improves the implementation and uptake of eHealth interventions.

Trial registration: Netherlands National Trial Register ID number: NTR3779; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3779 (Archived by WebCite at http://www.webcitation.org/6TdfALKxV).

No MeSH data available.


Related in: MedlinePlus

Intervention objectives, theory-based methods, and practical strategies.
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figure3: Intervention objectives, theory-based methods, and practical strategies.

Mentions: The expressed barriers were analyzed, clustered, and translated into a list of intervention objectives (Step 2) and used as a basis for the central information of the intervention (Step 4). For example, patients did not want to be bothersome and therefore they found it hard to ask (all of) their questions and to express details about their physical and/or mental health status. This information was used to develop information about how to request attention for your prepared questions (Figure 3, Objective 4) and about the importance of expressing your physical complaints and worries (Figure 3, Objective 8). Participants also reported that their communication attitude and skills changed over time, and so did their perceived barriers and facilitators. This finding stressed the need to inquire about the patient’s needs before every hospital visit and tailor information accordingly.


Active patient participation in the development of an online intervention.

van Bruinessen IR, van Weel-Baumgarten EM, Snippe HW, Gouw H, Zijlstra JM, van Dulmen S - JMIR Res Protoc (2014)

Intervention objectives, theory-based methods, and practical strategies.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4259996&req=5

figure3: Intervention objectives, theory-based methods, and practical strategies.
Mentions: The expressed barriers were analyzed, clustered, and translated into a list of intervention objectives (Step 2) and used as a basis for the central information of the intervention (Step 4). For example, patients did not want to be bothersome and therefore they found it hard to ask (all of) their questions and to express details about their physical and/or mental health status. This information was used to develop information about how to request attention for your prepared questions (Figure 3, Objective 4) and about the importance of expressing your physical complaints and worries (Figure 3, Objective 8). Participants also reported that their communication attitude and skills changed over time, and so did their perceived barriers and facilitators. This finding stressed the need to inquire about the patient’s needs before every hospital visit and tailor information accordingly.

Bottom Line: Delivering such supportive interventions online can have potential benefits in terms of accessibility, cost-effectiveness, and ability to tailor information to personal needs.Early involvement, involvement on different levels, and flexibility in terms of planning and setup seem to be preconditions to creating a bottom-up inspired development procedure with (seriously ill) patients.Further research is necessary to find out if a more patient-centered approach improves the implementation and uptake of eHealth interventions.

View Article: PubMed Central - HTML - PubMed

Affiliation: NIVEL (Netherlands Institute for Health Services Research), Utrecht, Netherlands. i.vanbruinessen@nivel.nl.

ABSTRACT

Background: An important and challenging part of living with cancer relates to the repeated visits to the hospital. Since how patients cope between these post-diagnostic visits depends partly on the information and support received from their physician during the visits, it is important to make the most of them. Recent findings reinforce the importance of training not only the health care professionals in communication skills, but providing patients with support in communication as well. Delivering such supportive interventions online can have potential benefits in terms of accessibility, cost-effectiveness, and ability to tailor information to personal needs. However, problems with attrition (dropout, non-usage) during the test phase and poor uptake after implementation are frequently reported. The marginal level of engagement of the patient as end user seems to play a role in this. Therefore, recent research suggests integrating theory-based development methods with methods that promote involvement of the patient at an early stage. This paper describes a participatory protocol, used to let patients guide a theory-informed development process.

Objective: The objective of this project was to apply a bottom-up inspired procedure to develop a patient-centered intervention with corresponding evaluation and implementation plan.

Methods: The applied development protocol was based on the intervention mapping framework, combined with patient participatory methods that were inspired by the participation ladder and user-centred design methods.

Results: The applied protocol led to a self-directed online communication intervention aimed at helping patients gain control during their communications with health care professionals. It also led to an evaluation plan and an implementation plan. The protocol enabled the continuous involvement of patient research partners and the partial involvement of patient service users, which led to valuable insights and improvements.

Conclusions: The applied protocol realized patient participation on different levels throughout the entire project. Early involvement, involvement on different levels, and flexibility in terms of planning and setup seem to be preconditions to creating a bottom-up inspired development procedure with (seriously ill) patients. Further research is necessary to find out if a more patient-centered approach improves the implementation and uptake of eHealth interventions.

Trial registration: Netherlands National Trial Register ID number: NTR3779; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3779 (Archived by WebCite at http://www.webcitation.org/6TdfALKxV).

No MeSH data available.


Related in: MedlinePlus