Sharing Evidence with Other Stakeholders

The evidence you pull together and organize is also relevant in the wider community. Lack of community inclusion and accessibility constitute enduring challenges which the disability sector face. Using collated material and stories to demonstrate issues of this nature to the wider community possesses potential to bring greater awareness of the inequity encountered by people living with disability across Australia. Peer support group evidence can be part of the overall picture in raising this kind of awareness.

One of the ILC Outcomes sought by the NDIA is for ‘people with disability actively contribute to leading, shaping and influencing their community’. Peer programs can use information they collect to illustrate key issues in the lives of their members as people living with disability. When significant and sizeable issues come up in their lives, peer programs can play a key role in supporting their attendees to express their concerns and have a say in their community.

We were provided with a powerful example of what can be achieved during 2018. In a influential campaign, 20 peer consumer groups came together to fight cuts of $13 million a year in funding for advocacy groups when the NSW state government transferred its disability services spending to the National Disability Insurance Scheme (NDIS) in July…… and won! The ‘Stand by Me’ campaign was run by the NSW Disability Advocacy Alliance that empower people with a disability to have a voice. This campaign was picked up by the Australian media, particularly in the NFP space, and the groups gained a successful outcome.

This campaign is one example of a peer group playing a key role in giving people with disability a voice in our community. Another example, when a number of user led acquired disability organisations fought a government decision to close its state-wide rehabilitation centre, is discussed here: https://www.abc.net.au/news/2015-09-29/relocation-of-spinal-injury-services-leaves-patients-worse-off/6813846.

Providing members of the community – including participants, their families and friends, staff/management or other disability or peer support system stakeholders, elected officials, and the public – with information about your peer programs may lead to greater community buy-in for your user led organisation. By publicly sharing your findings, you are also contributing to the evidence base for peer support groups. It may be important for you to publish papers in peer-reviewed journals (you could possibly link in with a local University for a team approach, enabling this), share press releases with the media, or report to a larger stakeholder base (local or national advocates). You might want to present your results at a local or national conference. Each of these forums have different requirements for the types of information you present, your level of detail in describing results, together with presentation format.

When possible, consider involving key stakeholders in the reporting process. This may involve sharing preliminary results with staff, team members and/or group facilitators, local advocates, or others who have an interest in peer programs. These individuals can review your work and comment on whether your evidence and reporting ‘makes sense’ and gives the right level of detail. They may be able to offer alternative interpretations of the results as well, identifying things you may have overlooked or lending insights to complex findings. Make sure to build in time for stakeholder review to ensure that you are describing your program accurately as well as its impact appropriately.

Whatever format you choose for your result dissemination, it is essential you make them available in multiple formats. This will ensure your hard earned evidence is accessible to a variety of stakeholders— peers, advocates, funders, members, and the public. For example, if you create a technical report for the ILC, you may be advised to also create a one-page summary or infographic, highlighting the most important points using simple language, which can be shared with members, an MP or the public. Producing materials in various formats increases the impact of your evidence gathering, analysis and interpretation by helping reach diverse audiences in different ways. This will ensure that all those who played any role by contributing to the evidence gathering process, can see the results and appreciate the importance of their role.

Let us reflect upon some final issues relating to evidence sharing beyond ILC, internal management concerns and sharing of information with and for our key stakeholders:

1. Grant Requirements are a minimum:

Let us first note that the data reported to funders, may or may not be the kind of information the community is interested in, or that you are keen to know about your peer program. Grant required data might also not be evidence you think is best to share with the public. This means that your evidence then cannot contribute to the evidence base surrounding peer support – this is because nobody will know the evaluation was conducted. One way to think about data reported to funders is that those efforts may represent the ‘minimum’ requirements for your evidence accumulation. You can then further develop this core information to boost your other evaluation goals.

2. We are not just looking for positive stories:

Even if results do not indicate that the program has been working the way you hoped it would, you may apply the results to enhance efforts to make it better. Our focus is always on learning and improving, not blaming.

3. Economic Evaluations are a longer term requirement:

In an ideal world, we would all have sufficient time, resources, expertise (and perhaps even energy) to undertake rigorous economic evaluations on our peer programs. For example, it would be incredibly beneficial for us to have overall findings that illustrate the longer-term savings secured by the NDIS thanks to the individual capacity building achieved by peer support programs. This may well be critical in securing immediate buy-in and long-term investment in peer support programs. Decision-makers and government bodies may eventually require concrete evidence of the financial benefits, sustainability and value added outcomes of peer support programs (see discussion at http://peersforprogress.org/resource-guide/cost-effectiveness-analysis-and-business-case/). In the US projects to develop similar relevant evidence have been undertaken with support from ‘Peers for Progress’. For example, Cost-Benefit Analysis (CBA) has been undertaken which entails estimating and tallying the money value of the benefits and costs of peer support to the community. Cost-Effectiveness Analysis was also undertaken in these projects, which is a study that fully investigates the cost side but does not translate the benefits (NDIS core support reduced needs, reduced health and GP visits, illness prevented) into a monetary value. This approach can redirect resources from ineffective to effective programs and allocate resources from less cost-effective to more cost-effective care models. A Socio Economic analysis of a peer support program was funded by JFA Purple Orange funded project during 2014, and this report is available here.