Developing patient-centred research methods for complex interventions: acupuncture for people with chronic disease

Lead Research Organisation: University of Bristol
Department Name: Social Medicine

Abstract

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Publications

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MacPherson H (2008) Developments in Acupuncture Research: Big-Picture Perspectives from the Leading Edge in The Journal of Alternative and Complementary Medicine

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Paterson C (2008) "Playing their parts": the experiences of participants in a randomized sham-controlled acupuncture trial. in Journal of alternative and complementary medicine (New York, N.Y.)

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Paterson C (2009) Evaluating complex health interventions: a critical analysis of the 'outcomes' concept. in BMC complementary and alternative medicine

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Paterson C (2008) Evaluating a massage therapy training and treatment programme in a remote Aboriginal community. in Complementary therapies in clinical practice

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Polley MJ (2007) How to summarise and report written qualitative data from patients: a method for use in cancer support care. in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

 
Description Individualised outcome measures
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in other policy documents
Impact My work on individualised outcome measures, much of which is publically available on-line at www.pms.ac.uk/mymop, has been cited in many reviews and contributes to current discussion about using Patient Reported outcome measures (PROMS) in clinical practice. The questionnaire MYMOP was a primary outcome in the government funded Evaluation of a CAM Pilot Project in Northern Ireland (2008) and is used by researchers, especially practitioner researchers, in service evaluations. Over the last two years 108 researchers have registered to use the questionnaire (since january 2008), including researchers in USA, Canada, and Australia. MYMOP has also been adapted for use in cancer support settings and this new questionnaire, MYCaW, is used routinely in over 10 hospices and other integrated cancer support units such as Breast Havens.
 
Description King's Fund Partners for Health in London
Amount £160,000 (GBP)
Organisation King's Fund 
Sector Charity/Non Profit
Country United Kingdom
Start  
 
Description Lotte & John Hecht Memorial Foundation Funding
Amount £28,000 (GBP)
Organisation Lotte & John Hecht Memorial Foundation 
Sector Charity/Non Profit
Country Canada
Start  
 
Title MYCaW Qualitative analysis framework 
Description We have developed a system of categories which will promote the full analysis and reporting of the written qualitative data that is generated by open questionnaire questions, such as those on the MYCaW questionnaire. The categores that we have developed relate to cancer support care, but the methodology that we published could be used in other areas. It is important because without such frameworks many researchers report the quantitative findings but do not use the qualitative data because they lack resources and skills. 
Type Of Material Data analysis technique 
Year Produced 2007 
Provided To Others? Yes  
Impact The framework is available on-line and published in a peer-reviewed paper ( 17619910) but it is probably too early to be able to demonstrate impact 
 
Description Collaboration with RMIT university and Hands on Health in Australia 
Organisation RMIT University
Country Australia 
Sector Academic/University 
PI Contribution I undertook qualitative research studies and contributed teaching and lectures on qualitative methods. I assisted in evaluations of community projects using individualised outcome measure that were developed during my fellowship period.
Collaborator Contribution Hosted a 6 month study during my MRC fellowship and also provided links to a charity Hands on Health with whom I have carried out other small scale evaluations of services. After my fellowship ended I have continued to correspond and visit colleagues there, giving lectures and seminars in qualitative research methods in 2009. They also introduced me to Professor Jianping Liu, Beijing, China, where I delivered further teaching in qualitative methods in 2006.
Impact Publications: 18315508; 18640627; 19091935 Co-applicant in succssful funding bid for Hands on Health Philippines: Project Hope (evaluation of charity-provided massage therapy training and service)
 
Description University of Calgary, Canada 
Organisation University of Calgary
Country Canada 
Sector Academic/University 
PI Contribution I was a named collaborator on funding of $28,000 CAD from Lotte & John Hecht Memorial Foundation and have contributed to the review work. I was lead author on a joint publication, a co-investigor on the INCAM outcomes database (http://www.outcomesdatabase.org/) and have ongoing work concerning outcome measures in complementary medicine research
Collaborator Contribution In collaboration with colleagues at the University of calgaray I have undertaken a literature review and was a collaborator on an joint funding bid (unsuccessful) with Universities of Calgary and Tromso, Norway.
Impact Publication 19538715 INCAM Outcomes Database (http://www.outcomesdatabase.org/)
Start Year 2006
 
Description Invited plenary speaker at the Society of Acupuncture Research, Baltimore, USA 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Primary Audience Health professionals
Results and Impact This was an important international conference where I presented a plenary on my experiences of mixed methods approaches to researching acupuncture. During and following the conference there was considerable discussion around the applicability of sham-conrolled acupuncture trials as well as the importance of keeping the patients' perspectives central to our research. I also presented an invited plenary papers at a conference in Canada, which cemented some research collaborations which have since flourished.

After the conference I successfully submitted a discussion paper for publication in USA (PMID: 18307391 ).
Year(s) Of Engagement Activity 2007
 
Description Professionals meetings - herbalists and others 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Primary Audience Health professionals
Results and Impact I disseminated my findings about researching complex interventions and the research possibilities for the profession. I have spoken at many other professional meetings, such as the annual Research Day of British Acupuncture Council, and that of British Medical Acupuncture Asssociation, and physiotherapists and others

I think the impact is more gradual and bottom up
Year(s) Of Engagement Activity 2008
 
Description The King's Fund. Assessing complementary practice: Building consensus on appropriate research methods. London, 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Primary Audience Policymakers/politicians
Results and Impact This King's Fund conference brought together researchers, professionals, patients and policy makers and I was an invited speaker. The conference demonstrated some shift towards better sharing of perspectives across these different groups and was widely discussed afterwards. Unfortunately, no conference proceedings have yet been published. I have been invited to speak at a number of other similar conferences. For example - The science and art of healing - understanding the theraputic response at The Royal College of Physicians, Sep 13th 2007.

This type of dissemination links into the wider NHS policy debates around 'patient choice' and shared decision making in consultations and have the potential to influence service provision for people with long-term conditions.
Year(s) Of Engagement Activity 2007
 
Description patient leaflets 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? Yes
Primary Audience Participants in your research and patient groups
Results and Impact At the end of each of my projects I design a leaflet for a lay audience and send it to all participants (in the case of qualitative studies) or to all centres and lay organisations of interest in the case of larger quantitative studies

Although I encourage feedback from those that receive these, I have only had a few positive emails
Year(s) Of Engagement Activity 2006,2007