An introduction to Cancer, Older People and Advocacy Outcomes

This introduction to cancer advocacy outcomes sets out some of the challenges we have found in defining and capturing outcomes from our Cancer, Older People and Advocacy programme.  It is intended to get services thinking about the ways in which they can meet these challenges, sharing learning from one of our partner projects, I-CANN, who have undertaken a research project exploring COPA outcome data collection[1].

Quality standards

As indicated in OPAAL’s Cancer, Older People and Advocacy’s Quality Standards an effective service has effective monitoring and evaluation processes in place and reports on key outcomes for clients.  The Standards set out that a quality COPA service:

“Has effective monitoring and evaluation processes in place, using nationally agreed templates to gather information.  These monitoring and evaluation processes provide feedback from clients to help inform the following:

  • The level of satisfaction with the service they have received, whether or not they would recommend the service to others
  • How far their desired outcomes, expressed at the start of the advocacy relationship, have been met
  • If the service has enhanced their ability to speak up for themselves”

This standard is met when:

  • Feedback is gathered regularly from clients in the most appropriate way for the individuals involved
  • Information on feedback forms is routinely analysed in order to assess client satisfaction
  • Changes to service delivery are made that reflect feedback and the use of identified best practice
  • Areas where clients are dissatisfied are appropriately addressed with the individual in compliance with organisational policies and procedures
  • Outcomes achieved are identified, recorded electronically and analysed
  • Feedback information is shared with OPAAL and COPA partners so that best practice can be shared and success celebrated

Defining outcomes for Cancer, Older People and Advocacy services

These quality standards hint that advocacy outcomes can be multifaceted. They can be specific to the individual, for example how far the individual’s goals set out at the start of the advocacy intervention have been met.

They can be about the many benefits that can come from accessing an advocacy service, for example the individual feeling more able to speak up for themselves, or feeling less isolated.  They can be about changes to service delivery, both in terms of reflecting changes to the advocacy service as a result of client feedback, or about changes to local statutory service delivery/design where advocacy services identify issues within health/care or wider service delivery which could be improved, changed or challenged.

In defining COPA outcomes we tried to define outcomes that are user focussed, but projects are not limited to these measures, we encouraged project partners to track individual outcome measures that are personal to the advocacy partner, and to capture service satisfaction feedback, and casestudy evidence both of which complement this outcome data.

COPA programme outcomes

As a programme we have drawn up the following outcome measures to support the delivery of quality cancer, older people and advocacy services.  These are captured on our programme database, SAM, when the advocacy case is closed, and are measured with a simple ‘yes’, ‘no’ or ‘partially achieved’.

Although this scoring system may mean that we find we do not get as much granularity to our data, the advantage of this simple system is that it makes it easier to be consistently applied across advocacy partner projects.  Also advocacy partners are not asked to ‘grade’ the improvement or reduction across each outcome domain, something we know people who access advocacy services can struggle with, and it can be difficult to track across multiple partner projects who might present outcomes to clients in different ways.

Many of the outcome measures we have selected are aligned to Macmillan’s Nine Outcomes, the things that matter most to people affected by cancer, the Macmillan outcomes they link to are shown in brackets beside outcome measures:

  1. Increased/regained/maintained independence
  2. Increased confidence
  3. Increased access to support (Macmillan outcome: I know what I can do to help myself and who else can help me)
  4. Reduced dependence on health services (Macmillan outcome: I know what I can do to help myself/who else can help)
  5. Improved quality of life
  6. Improved health and emotional wellbeing
  7. I am able to contribute more to my local community (Macmillan outcome: I feel part of my community, I am inspired to give something back)
  8. Those around me are better able to cope (Macmillan outcome: those around me are well supported)
  9. Involved in decision-making (Macmillan outcome: I understand so I make good decisions)
  10. Been treated with dignity and respect (Macmillan outcome: I am treated with dignity and respect)
  11. Expressed End of Life wishes (Macmillan outcome: I want to die well)
  12. Reduced isolation (Macmillan outcome: I know what I can do to help myself and who else can help me)
  13. Improve knowledge and understanding (Macmillan outcome: I understand so I make good decisions)
  14. Improved financial situation
  15. Understand and access care services (Macmillan outcome: I get the treatment/care that are best for my cancer and my life)
  16. Understand and access treatment (Macmillan outcome: I get the treatment and care that are best for my cancer and my life)

Cancer, Older People and Advocacy services are in the main delivered by peer advocates, supporting older people affected by cancer.  This cohort comes with its own specific issues which can have an impact on outcome monitoring. We are not saying that these issues are exclusive to older people affected by cancer, but they are relevant to this programme.  These issues can include the advocacy partner finding their cancer journey so challenging that they find it difficult to identify the outcomes they wish to achieve, or they find it hard to say what the advocate has done for them at the end of the intervention.  In some cases the advocacy partner becomes unwell and the advocacy service feels it inappropriate to follow up on outcomes, or the advocacy partner dies during the advocacy intervention, here services wrestle with issues including whether to follow up with family/carers.

I-CANN are continuing to explore these issues, and one avenue they are exploring is whether it would be appropriate to consider advocacy outcomes, as reported by the advocate, or even from the viewpoint of the advocate. This could be very useful where project partners are unable to elicit the client’s viewpoint for example when their work with an individual has ended at their death.  This could also add to the picture if the older person struggles to say what benefit the advocacy intervention has had.

What older people affected by cancer say about COPA support

Soundbytes and qualitative feedback from clients complement outcome monitoring and help partner projects understand what older people affected by cancer value about the service.  I-CANN recorded comments from service users, this feedback further highlights some of the complexities of seeking feedback on outcomes of a service, including service users who do not always remember what support they have received, and those who engage with the service for only a short while.  This type of feedback can help a service demonstrate its value to funders, complementing outcomes data, and can also help to build a strong picture about why it is not always possible to capture outcomes data for all clients:

  • Advocacy helped me and my partner sort our life out both emotionally and financially. We now feel able to face whatever we need to
  • We only really spoke over the phone, as my husband died shortly after, so I did not continue with the advocacy service, but I found it very useful to have a listening voice
  • I can’t really remember exactly what help I was given!
  • It was ok using advocacy for someone to talk to, but I can manage on my own

Conclusion: an early view of advocacy outcomes for COPA

Though I-CANN found it proved quite difficult to get client feedback from COPA clients they reflect that it has been a worthwhile learning exercise.  I-CANN’s outcome report concludes that advocacy support has a much wider impact than just health and social care; COPA referrals have been related to finances, benefits, accommodation, practical aids social isolation and many other non-clinical areas.  Positive outcomes have been achieved for older people affected by cancer and the outcomes achieved well demonstrate that the service is providing quality advocacy support which is commensurate with the general principles of advocacy.  The five outcome areas where the greatest improvements in outcome scores were seen were:

  • Better able to understand and access care services
  • Less isolated, better relationships
  • General improved knowledge and understanding
  • Better able to understand and access treatment
  • Maintaining dignity and respect

These five domains, when looked at alongside comments and feedback from users of the service start to build a strong picture of the impact of independent advocacy on the lives of older people affected by cancer.

[1] For this pilot study I-CANN considered all clients who they and KPAIS (Knowsley Pensioners Advocacy & Information Service) worked with from commencement of service, (August 2014 for I-CANN -July 2014 for KPAIS) and whose cases had closed prior to 1 November 2015.