Digital health and peer support
Digital health technologies offer limitless possibilities for improvements in patient care and since 2012 have gained a central place in United Kingdom (UK) national health policy.15 However, at present their reach is restricted to those able and willing to access and use information technology.16 A variety of factors such as lack of IT literacy among older people, language related barriers and physical disabilities exclude sections of the population. As access to digital systems widens, it is anticipated that in time this disparity will diminish. While this may occur, it currently leaves those without access or ability to use an internet-enabled device, at a disadvantage in terms of what is on offer to help improve their health.17
Local projects and national programmes have aimed to improve digital access and literacy through voluntary initiatives such as the Digital Champion Programme lead by Age UK, a major third sector organisation.18 More specifically focussed peer support in the digital domain has largely remained limited to encouraging compliance with online programmes. 19,20,21 Potential benefit may be gained, however, through the involvement of peers in enabling access to and participation in a range of digital health innovations such as online platforms and apps that provide information, help with decision making, or aid self-management and self-monitoring.
Peer support in a digital health intervention
To address the issue of access to digital health among older people and other underrepresented groups, we have been piloting a support role for peers which makes use of their skills, experience and empathy within the context of a research study. In designing our primary care-based feasibility study of an online cancer specific holistic needs assessment (csHNA) in prostate cancer (Integrated Care in Prostate Cancer, ICARE-P) 22,23,24 we were conscious of the need to encourage older men to take part and use the online system. To meet this need we developed the concept of an ITmate: a peer supporter with personal experience of prostate cancer who had sufficient confidence in using IT to allow him to assist others in taking part in the intervention. Set in a large conurbation in the West Midlands in the UK, the involvement of the ITmate proved invaluable in recruiting and engaging men in their mid-seventies and eighties.
The csHNA allows men to self-assess a range of physical and psychosocial concerns that commonly occur in association with prostate cancer. In planning the study, we had anticipated that participants would vary in their approach to the online system and that not all would require the same level of assistance. We envisaged that the ITmate would initially demonstrate the csHNA and that men would become increasingly independent users. However, in all instances he was asked to return to help participants undertake subsequent assessments. This may be un-surprising given the age and the degree of social isolation of the majority of participating men. The time lag between assessment time-points (generally over 3 months) also limited the potential for observational learning that would enable men to navigate the system independently, an important learning point for the development of comparable programmes.
For the ITmate himself, involvement in the study was demanding due to technical and logistical issues (e.g. arranging and attending study appointments at the required times), but enjoyable and rewarding to the extent that he continues to be involved in our programme of research.
Challenges and lessons
Initial challenges involved developing a role description that clearly defined its scope and limits. Subsequently, it was important to work with an established charity that already had an ongoing volunteer programme to help with advertising, screening and recruitment. As well as providing access to a wide range of potential candidates, this offered valuable safeguards to all involved.
Involving a peer supporter in a research study, particularly one in which participants are asked to disclose sensitive information, necessitate police disclosure and barring (DBS) checks are undertaken. Attention to issues of confidentiality and data security during the supporter training are also essential. A half-day session delivered by the research team addressed these issues as well as preparing the ITmate to introduce the csHNA to participants.
Valuable lessons for research and implementation were learnt during the study: a peer supporter involved in promoting participation in an online intervention must be confident in dealing with any problems that arise. Potentially, these may range from participant distress through to technical difficulties. Telephone access to a member of the project team for guidance and support during visits is critical. As well as a clear definition of the scope and limits of the role, peer supporters require guidance in the event of encountering a concerning situation such as a participant not answering the door when a home visit has been arranged, or when worrying information is disclosed. A lone worker policy is needed to ensure peer supporter safety. In addition, appropriate personal and vehicle insurance should be arranged during set up.
Peer support: lay health workers, voluntary workers and volunteers
Peer support has its roots in volunteerism and many organisations continue to rely on the large reserve of goodwill and experience of volunteers for its provision. With the development of peer roles that are more complex and demanding in terms of time commitment, training requirements and level of responsibility, payment is becoming a more common practice.
In the UK, paid peer supporters typically earn between £10-£12 per hour plus travelling expenses.25 Our ITmate was paid £10 per visit and travel costs were reimbursed. This is similar to the average paid in the USA for a ‘specialist’ peer supporter ($13.45 per hour).26
Health Services have increasingly incorporated paid roles for peers and other lay workers and extended their scope, particularly with regard to the provision of support for those with long term conditions.27Distinctions between this group of workers and the category of health care professional exist on a number of dimensions. These primarily include types of role (specific versus broad), training (specific versus broad training to a national standard), type of contract (short versus long term) and in opportunities for promotion or career development.
At the same time, health service policy both in the UK and internationally, is to encourage and capture the enthusiasm of the large body of potential volunteers –a group that has become ever more apparent during the COVID-19 pandemic. 28,29 Peer volunteers are frequently motivated by the desire to ‘give something back’.30 Moreover, benefits of volunteering to the volunteer have been identified in a range of settings.31 Studies of the health of volunteer peer supporters who assist others with ongoing physical and mental conditions, have shown benefits in symptom reduction and improvements in aspects of quality of life.32 In addition, a high proportion of volunteers are retired and financial reward may not be a priority.
The UK National Health Service (NHS) itself offers opportunities for volunteering. In addition it has recognised the value and importance of voluntary or third sector organisations and has committed to increased collaboration.28,33 These organisations, employ paid staff but operate through a network of voluntary workers and volunteers both of which include peers. Voluntary workers are under a contractual obligation to provide the services for which he or she is engaged and enjoy certain protections under law. A volunteer provides their services voluntarily i.e. they have no contract and are not protected by the 2010 Equality Act. Importantly, no automatic safeguards apply to the volunteer or to the organisation which their activities support. 34 However, codes of practice for guiding volunteer activity exist for volunteers within the NHS and have been widely adopted by national charities.35
In terms of broadening digital access, various models of peer support are possible and require exploration. For example, as part of another current digital intervention project36 led by a member of our study team, peers with varying levels of IT experience have been recruited via a local support group overseen by a national umbrella organisation. The group members are involved on a voluntary basis in introducing potential users to an online platform to support informal carers.
A volunteer based model appears more sustainable in terms of cost, particularly when individuals require ongoing assistance. It may be that paid peer support is most valuable in the intervention phase of a research study where there are likely to be additional requirements such as record keeping and attending study meetings. Volunteer-based peer support schemes may be best undertaken in the phase of wider implementation. Research is needed to clarify costs and benefits of both approaches in different contexts.
A framework for best practice
Whatever the particular model, there is a need for a framework for best practice for digital health interventions that involve peers. Safeguards are essential in the context of involvement in intervention delivery to protect both the peer and the participant. The need to establish some guiding principles has recently been identified by a group of international experts and in 2018 led to the publication of a consensus statement.2 This statement, included a charter of overarching principles as well as allowing for cultural differences and health care contexts. While these are specific to peer support in the field of mental health, many of the principles laid out may have wider application and provide a framework on which more detailed and relevant guidelines may be developed. There is a need for a standard based protocol that relates specifically to digital technology.