General Practice and Primary Care - Research Publications

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    Long-term consumer involvement in cancer research: Working towards partnership
    Milley, K ; Chima, S ; McIntosh, JG ; Ackland, E ; Emery, JD (WILEY, 2021-08)
    BACKGROUND: Meaningful consumer involvement in health research is important. There are limited data on how to maintain long-term consumer involvement. OBJECTIVE: To identify barriers and facilitators to meaningful long-term consumer involvement in research. DESIGN: Six semi-structured interviews were conducted with members of the Primary Care Collaborative Cancer Clinical Trials Group (PC4) Community Advisory Group (CAG) and included the review of 40 supporting documents. Interviews and documents were analysed using inductive thematic analysis; the themes were mapped onto the domains of Cancer Australia's National Framework for Consumer Involvement in Cancer Control. RESULTS: Equality, respect and feeling valued were facilitators to long-term involvement. These elements were part of an overarching theme of organizational commitment. Creating balance, managing competing deadlines and integrating a consumer role with a personal life were key barriers to involvement. These themes mapped strongly to the National Framework for Consumer Involvement in Cancer Control domains of committed organizations, capable consumers, inclusive groups and shared focus. CONCLUSION: Research networks should reflect on several factors to maintain long-term consumer involvement. Networks should aim to build a meaningful relationship, using clear communication and education, that reinforces the value and scope of a consumers contributions. We found that consumer education needs do not diminish over time and adequate skill development, support and feedback need to be on-going. Creating regular opportunities for feedback and reflection are important to continue to meet best practice guidelines.
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    Look who's talking now: Cancer in primary care on Twitter. An observational study
    Milley, KM ; Chima, SA ; Cummings, K-L ; Emery, JD (ROYAL COLL GENERAL PRACTITIONERS, 2021-01)
    BACKGROUND: Twitter is a microblogging platform that helps share information. It is a dynamic tool that has been embraced by many user types including consumers and healthcare professionals (HCPs). Currently, there are no data on how cancer in primary care features on Twitter. AIM: To explore the type of users and information shared about cancer in primary care on Twitter. DESIGN & SETTING: A descriptive exploratory study took place of publicly available Twitter data. METHOD: Tweets were searched between July 2015 and June 2017 for 'GP', 'general practice', 'primary care', or 'general practitioner' in conjunction with 'cancer'. A 20% random sample was coded for geographic location, user type, type of tweet, and theme. Tweet sentiment was analysed using R package sentimentr. Content that gained traction was compared by combining original tweets, retweets, favourites, and duration. RESULTS: There were a total of 3413 tweets from 1611 users in 44 countries. Consumers were the largest user group followed by health organisations, healthcare professionals, and the media. The most common theme across user types was diagnostic delay. Other themes that emerged included cancer screening, symptom awareness, and early diagnosis. Consumers published more negative tweets, particularly in relation to diagnostic delay. Health organisations focused on symptom awareness and screening. Over half of media tweets were stories that featured delayed diagnosis or screening. CONCLUSION: A broad range of users engage with Twitter to share information about cancer in primary care. Content is different between user groups, but diagnostic delay and symptom awareness are common themes. Healthcare and professional organisations may need to consider approaches to counter negative messages about diagnostic delay.