Stakeholder engagement in patient-centered outcomes research: high-touch or high-tech?

Abstract

Patient and stakeholder engagement enhances the meaningfulness of patient-centered outcomes research. Continuous engagement of diverse patients helps to achieve representativeness and to avoid tokenism, but is perceived as challenging due to resource and time constraints. The widespread availability of the internet, mobile phones, and electronic devices makes ‘high-tech’ solutions appealing, but such approaches may trade-off larger sample sizes for shallower engagement and/or skewed perspectives if most participants reflect users of technology. More traditional ‘high-touch’ solutions such as in-person interviews, focus groups, and town hall meetings can provide qualitative and sociological context and potentially more in-depth insights from small numbers of patients, but such approaches are also prone to selection bias as well. We compare and contrast high-tech and high-touch approaches to engaging stakeholders and suggest hybrid processes.

Keywords::

• eHealth
• innovation
• patient-centered outcomes research
• patient engagement
• stakeholders

Disclaimer

The findings and conclusions in this manuscript are those of the authors, who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this manuscript should be construed as an official position of AHRQ, LSDF or of the US Department of Health and Human Services.

Financial & competing interests disclosure

R Alfonso and D Lavallee supported by the AHRQ grant number R01HS022959 and LSDF Grant 4593311. C Mullins supported by AHRQ PCOR R24 grant number 1R24HS022135–01. P Wicks is employed by PatientsLikeMe. The PatientsLikeMe R&D team has received research support from Accorda, Abbott, the AKU Society, Avanir, Biogen, Boehringer Ingelheim, Genzyme, Janssen, Johnson & Johnson, Kaiser Permanente, Merck, Novartis, Otsuka, the Robert Wood Johnson Foundation, Sanofi, University of Maryland, University of Michigan and UCB. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Key issues

• It is anticipated that technology will continue to become more integrated into healthcare and healthcare research knowledge exchange within the research community about best practices is critical.

• No one-size-fits-all approach exists. The approach taken needs to match the goals of the project’s topic and scope.

• Factors such as cost and timelines may drive the selection of approach. Explaining rationale including potential limitations incurred is important.

• Engagement of diverse stakeholders is required regardless of the approach in order to assure representativeness of the population with the health condition.

• Standard practices for reporting approach(es) used in research activities including challenges and successes as part of work to inform others should be developed.