Lay Health Trainers in the NHS: Learning from the USA

Lay Health Trainers in the NHS:Learning from the USA Shelina Visram Postgraduate Research Associate Community, Health and Education Studies (CHESs) Research Centre

Aims of the Presentation • To explore the challenges in recruiting, supporting and evaluating lay health trainers in a UK context. • To highlight examples of good practice in involving lay advisors in public health, drawing on case studies from the USA.

Background • Health Trainers were the personalised strand of the ‘Choosing Health’white paper (DoH 2004). • It stated that Health Trainers would: • Offer tailored advice, motivation and practical support to people who want help to adopt healthier lifestyles. • Be recruited from, and representative of, their local communities. • Be funded in the 88 Spearhead PCTs in England from April 2006 and across the country from April 2007. • More than 1,200 Health Trainers have now been trained, including 50+ in the prison population.

Previous Research • A review of the evidence to support the implementation of Health Trainers – August 2005. • An evaluation of the early adopter phase of the Health Trainers project in the North East – April 2006. • Hosting a national Health Trainers evaluation meeting, in collaboration with Leeds Met University – May 2006. • A visit to two key sites in the USA – August 2007. • Further evaluation of the initiative in County Durham & Tees Valley / a phenomenological study of what it means to be a Health Trainer – September 2007.

Evidence Review • Lay or peer support has been widely used across diverse conditions and population groups. • Most published examples come from North America and fall into one of two main categories: • Peer or lay advisers: tend to be unpaid “natural helpers” who are trained to offer a community-based system of care. • Patient advocates: mediate between clients and professionals to ensure they are offered an informed choice of care. • Tend to be used as a “bridge” between the formal health care system and typically disadvantaged populations. • Successful interventions remain flexible and responsive to local needs, which are continually assessed.

Targeted Community Individual Generic

Targeted Sunderland Easington South Tyneside Sedgefield NorthTyneside Newcastle Community Individual Langbaurgh Gateshead Northumberland Generic

Findings from Local Evaluations • There was felt to have been a previous gap in the workforce dedicated to engaging with local communities. “It’s about going that extra mile and making services accessible in the true sense of the word, rather than expecting everyone to get to services, and understanding what will meet expected needs” [Manager] • However, the amount of support the Health Trainers themselves would need had been underestimated. “We hadn’t accounted for the amount of support and supervision that would be required – lots of issues around red tape and policies people need to know about if they are employed by a PCT” [Manager]

Findings from Local Evaluations • Emphasis was placed on local knowledge and interpersonal skills, not work experience or qualifications “…people are identifying with the fact that you know the area, you live in the area, you know the problems of the area. You’ve dealt with the problems, you’ve had them yourself, sort of thing.” [Health Trainer] • There was a perceived lack of awareness and support for the role amongst other professional groups “I think a lot of us felt that we had apron strings wrapped around us. And it was, well, the feelings, the personal feelings from me, I would describe it as, well, I felt that they above thought ‘well, she hasn’t got any qualifications, she’s never done this kind of work before, we can’t let her out loose on people’, kind of thing, you know. ‘In case she does something drastic.’” [Health Trainer]

COMMUNITIES Emphasis on local knowledge and life experience NHS Emphasis on formal qualifications and work experience Health Trainer Negative forces Stereotypes Labeling Lack of awareness Uncertainty Positive forces Shared identity Empathy Dedicated time Communication Positioning of the Health Trainer role

Conclusions (1) • A number of different Health Trainer models have emerged as a result of prior experience, areas of identified need and available resources. • The degree of complexity presents a significant challenge for evaluation of the initiative. • There remains a lack of clarity about the roles and responsibilities of the NHS Health Trainer. • This has implications for the way the service is perceived by professionals and the public.

Learning from the USA • Project REACH, led by Dr Pattie Tucker • Racial and Ethnic Action for Community Health • Funded and coordinated by the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. • NC-BCSP, led by Professor Jo Anne Earp • The North Carolina Breast Cancer Screening Programme • Coordinated by researchers at the University of North Carolina (UNC) at Chapel Hill.

North Carolina Breast Cancer Screening Programme • The goal was to reduce breast cancer mortality among rural African American women by increasing early detection and treatment. • Lay advisors are identified by members of their community as being ‘natural helpers’. • Provide one-to-one support, organise events and deliver group presentations. • Raise awareness through careful branding of the programme, using t-shirts and necklaces.

The Beaded Necklace This size lump may be found by getting mammograms every 1-2 years On a woman’s first mammogram By a healthcare provider giving a clinical breast exam By a woman who performs breast self-examination (BSE) every month By a woman who occasionally performs BSE By a woman who rarely performs BSE Photo taken from the NC-BCSP website, http://bcsp.med.unc.edu/index.htm

‘Save Our Sisters’ T-shirts Photos taken from the NC-BCSP website, http://bcsp.med.unc.edu/index.htm

NC-BCSP Evaluation • Aim: To assess the effectiveness of the intervention in increasing mammography use and reducing disparities. • Design: Quasi-experimental community trial. • Baseline survey (1993-1994), first follow-up (1996-1997) and second (1999-2000). • Four cohorts: black / white, intervention / comparison. • Systematic random sample: 2,296 eligible women were approached and 1,316 completed the second follow-up. • Found improvements in screening amongst all groups. • Some of the greatest benefits were for women that other types of interventions usually fail to reach.

Intervention Effect *Had a mammography in the last two years. Overall increase: Intervention +23.3% Comparison +17.4% Difference of differences +5.9 %

Intervention Effect

Conclusions (2) • An outreach strategy involving lay health advisors can have a positive impact on health disparities. • Challenges to the success of the intervention included: • Tight funding for long-term staffing costs • Professional culture that equates “real work” with office work and paperwork • Strong emphasis on treatment, de-emphasising outreach and education • Low commitment to building culturally sensitive community partnerships. • Community-based strategies are likely to be necessary in interventions targeting behaviour change amongst disadvantaged populations.

Implications for Health Trainers • Peer education is known to be a successful technique in providing information and facilitate behaviour change in a culturally competent way. • The use of lay workers can also be a sustainable model when funding for a project ends. • Multi-level interventions are likely to have the most significant impact on health inequalities. • Evaluation should address effectiveness and fidelity at all levels of the intervention, as well as seeking wide stakeholder participation in order to enhance utility.

Lay Health Trainers in the NHS: Learning from the USA