TWEETCHAT: 24th June – Involving service users in design of digital technologies

Following on from our May #ReSNetSLT tweetchat about assistive writing interventions for people with aphasia, this month we have selected 2 papers about the design and development of digital technologies.

One paper covers a range of technologies for people with (mild) cognitive impairments and dementia. The other paper looks at mobile phone apps for people with aphasia.

Both papers question how far service-users themselves have been directly involved the design and development of these technologies – at what stage in the process were they involved; and how was their involvement supported.

In the current context of exceptionally rapid adoption of new ways of working, specifically including digital approaches, telehealth and telerehabilitation, it is highly timely for us to question the underpinning research evidence.

These two papers are reviews of other published work, which again is a useful prompt for us to reflect on the importance of mapping out the existing evidence base before embarking on any new primary research. One study is a Systematic Review, whilst the other is a Scoping Review. Both types of review frame a specific and focused question, and undertake a rigorous search strategy.

The process of a Systematic Review includes a quality appraisal of the methodological strengths of the included studies, whilst the key purpose of the Scoping Review is to map out the gaps in the current evidence base, to inform the priorities for future research.

Paper One:

Usability and acceptability of technology for community-dwelling older adults with mild cognitive impairment and dementia: a systematic literature review (2018) by Torhild Holthe, Liv Halvorsrud, Dag Karterud, Kari-Anne Hoel and Anne Lund.

Paper Two:

Patient-centred Design of Aphasia Therapy Apps: A scoping review (2019) Aphasie und verwandte Gebiete | Aphasie et domaines associés by Jenny Griffel, Juliane Leinweber, Bianca Spelter & Hazel Roddam.

Our chat will be led by Team ReSNetSLT with Sophie Chalmers, Milly Heelan and Hazel Roddam.

Paper One: The specific purpose of this paper was to review how people with mild cognitive impairment and dementia (MCI/D) and their family carers (FCs) were involved in the development of a range of relevant technologies. Four categories (domains) of technologies were covered:

1) safe walking indoors and outdoors, 2) safe living, 3) independent living, 4) entertainment and social communication.

In particular, the paper authors were interested in the service users’ perceptions of the usability and acceptability of these technologies. However, in the 29 included papers in this review, even where the studies intended to measure usability and acceptability, it was shown that this was difficult to assess. As an alternative, terms including “user friendliness” and “acceptance” were used.

User participation in the 29 studies was relatively high. Methods for engagement of service users and other stakeholders included focus groups, workshops, and interviews. The timing of involvement of the service users in the design and development process was also mapped across the included studies.

Key recommendations from this study included the importance of evaluating these technologies by people with MCI/D and their FCs in their own homes. Very few of the included studies reported on the impact of technology use with regard to measures of quality of life, occupational performance, or human dignity.

Paper Two: The purpose of this paper was to provide an overview of the current research evidence base for whether or not people with aphasia (PWA) have been actively involved in the process of design and development of apps for mobile device aphasia therapy.

This study was specific to German language apps, developed for users in the German language countries (including Austria, Germany and Switzerland). The paper is written in English, although the abstract is also published in German.

This Scoping Review followed the specific protocol advocated by Tricco et al. (2016) and the Joanna Briggs Institute (2015) guidance on scoping reviews, to ensure a fully transparent and robust process. From almost 500 original sources identified, only 14 met the inclusion criteria for inclusion in the review. At the time of this review there were three apps commercially available, although others were known to be under development.

From the published reports of patient/service user involvement, the reported nature and timing of their participation was analysed. The developers of each of the three apps incorporated some patient participation and feedback, although there was high variability in the level of explicit detail of how these processes were conducted. Differences were also noted between more structured, consecutive development processes, and examples of more evolving, iterative processes.

Most of the reported studies focused on therapy effectiveness, although some also explored the patients’ perceptions of accessibility and acceptability of the respective apps. The study findings highlighted the need for early and direct involvement of service users in the design and development phases.

Our questions for discussion:

  1. What digital technologies/approaches have you used recently as part of your interventions or case management?
  2. What research evidence are you aware of/or were you able to locate for the effectiveness of those digital technologies/approaches?
  3. What information are you aware of/or were you able to locate for how service users had been involved at any stage of the design or development process?
  4. What observations or insights do you have from service-user feedback of the impact on their quality of life from using those technologies as part of their therapy or case management?