13. Mosconi P. et al. PartecipaSalute, an Italian project to involve lay people, patients’ associations and scientific-medical representatives in the health debate, Health Expectations (2007); 10(2): pages 194-204.
Download Abstract at: http://www3.interscience.wiley.com/journal/112696822/abstract?RETRY=1&SRETRY=0
Background
Patient involvement in research as research subjects in clinical trials is insufficient. Patient organisations increasingly wish to play a more active role in their treatment.
Aim
The overall goal of this project was to create the cultural and methodological conditions essential to support and increase shared initiatives between consumer/patients associations and the scienti?c community.
Good practices
In the ?rst two years of the project, PartecipaSalute accomplished worthwhile results in terms of:
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Knowledge of the role of patients associations in health debate and decision-making.
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Dissemination of critical medical information gathering practical tools to evaluate medical information thought the website, and organizing training courses.
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Growth of a sound group of patients/lay people representatives working together with scientists in collaborative initiatives (courses, consensus, research projects, etc.).
Website: www.partecipasalute.it
Recommendations
Levels of information for participation in clinical trials are generally low and few patients are willing to participate. In order to improve this:
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New strategies to educate the public and patients are needed.
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The more patients are informed about the importance of research, the more ready they are to become involved.
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Patient Organisations can provide information to potential clinical trial participants.
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Patient organisations can play a role in translating research.
TRANSBIG is a collaboration of 40 partners from 21 countries and includes scientists, physicians, patient groups, cancer society’s and the industry.
Health professionals also need training in how to include the patient in the research process. Conferences and programs that integrate scientist, clinician and advocate can help. It would also be beneficial to inform patient organisations of clinical trials being conducted and raise public awareness.
Best practices active involvement
Different studies conclude that patient involvement in design and conduct of controlled trials seems to be growing and welcomed by most researchers. This involvement is likely to improve relevance of research and address patients’ needs. The national breast cancer coalition (NBCC) has a seat at the decision-making table on spending research funds. They set up training to educate their advocates on breast cancer research. EUROPA DONNA organizes advocacy training for their members and founded the European Patients Forum (EPF); a pan-European body or interests of patients in healthcare debate. Other initiatives that integrate the public and patients are INVOLVE and NICE. In the US the Food and drug administration (FDA) has consumers on its advisory committees for a number of years. In the EU it is mandatory to have lay members in the ethical committee.
Website EUROPA DONNA: www.europadonna.org
Website TRANSBIG: www.breastinternationalgroup.org
14. Abma TA. Patients as partners in a health research agenda setting: The feasibility of a participatory methodology. Eval Health Prof 2006 Dec;29(4):424-39.
Download Abstract at: http://ehp.sagepub.com/cgi/content/abstract/29/4/424
15. Thornton H. Patient and public involvement in clinical trials. Br Med J 2008;336(7650):903.
Download Fulltext at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18436920
Aim
Patient and public involvement has been defined as experimenting with instead of experimenting on patients. In this article Thornton gives an overview of the history of patient and public participation.
Best practices
A few early examples date from the 1970’s and 1980’s. Rose Kushner was a freelance writer who also had breast cancer. She wrote a book on the evidence of the effects of radial mastectomy. She eventually ended up reviewing new research proposals for the US national cancer institute. Another example is that of well organized groups of people with AIDS in the US and UK who challenged researchers on changing their research design.
In the UK in ’95 in response to the Health Select committee report on breast cancer ministers recommended that patients should be involved in all stages of a trial. In 96 the standing advisory group on consumer involvement in the NHS R&D programme was formed to advise the Central research and development committee. The group amongst others included representatives of consumer bodies. Also the Citizens council of the national institute for health and clinical excellence contributes to the decisions on prioritizing healthcare resources.
Conclusion
Healthy development of patient partnership (has depended on and) will depend on policy directives that encourage institutional collaboration.
16. Rabeharisoa V. The struggle against neuromuscular diseases in France and the emergence of the "partnership model" of patient organisation. Soc Sci Med 2003 Dec;57(11):2127-36.
Download at: http://www.ncbi.nlm.nih.gov/pubmed/14512243
Summary
The paper argues that the model of the AFM's engagement in research-the "partnership model"-is original insofar as it renews the power relations between patients and professionals. Based on a long-term study of the French Muscular Dystrophy Organisation, this "partnership model" is characterised and its implications discussed in three respects: the possible generalisation of the mode of relations it establishes between patients and professionals; its effects on the steering of research; and its consequences for the dynamics of patient organisations movements.
Website AFM: www.afm-france.org
17. Caron-Flinterman JF, Broerse JE, Teerling J, Bunders JF. Patients' priorities concerning health research: The case of asthma and COPD research in the Netherlands. Health Expect 2005 Sep;8(3):253-63.
Download Abstract at: http://www3.interscience.wiley.com/journal/118712203/abstract
Aim
Authors aimed to assess the ability of Asthma and COPD patients to prioritize research in a well-argued way.
Findings
The consultation procedure successfully elicited patients' research priorities including the underlying arguments. Our results indicate that asthma and COPD patients are capable of research prioritization in a well-argued way and that they highly value biomedical research. Furthermore, as they prioritized some research topics that are not covered by current Dutch research programmes; we argue that patient participation can broaden research agenda setting.
18. Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: Advantages for health research. Br Med J 1998;316(7129):463-6.
From invoNET database: http://www.invo.org.uk/Resources_Results.asp?val1=all
Download at: http://www.ncbi.nlm.nih.gov/pubmed/9492683
Summary
This paper outlines two basic reasons for involving consumers in research and discusses some common objections.
The two reasons for involvement:
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It is a political imperative - as owners of publicly funded research the public should have a say in what is done and how. Then involvement becomes a goal in its own right. The processes of decision-making become more important than the quality of those decisions.
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It can improve the quality of research - since lay views are often different from professionals, have legitimacy and can add value.
The authors then address common objections and outline a framework for thinking about lay involvement in research. They conclude that more work needs to be done to explore the advantages, disadvantages and resource implications of involvement in different circumstances.
19. Kent A, Oosterwijk C. A patient and family perspective on gene therapy for rare diseases. J Gene Med 2007;9(10).
Download at: http://www.ncbi.nlm.nih.gov/pubmed/17880044
The authors describe the view of patients and patient organisations on gene therapy research and gene therapy regulations. In particular, the added value of partnership between scientists and patient organisations, and patient involvement in the gene therapy field, are addressed.
20. Chalmers I. What do I want from health research and researchers when I am a patient? BMJ 1995 May 20;310(6990):1315-8.
Download Abstract at: http://www.bmj.com/cgi/content/extract/310/6990/1315
21. Mariotto A. Patient partnership is not a magic formula. Br Med J 1999;319(7212):783.
Download Abstract at: http://www.bmj.com/cgi/content/short/319/7212/783
22. Pronk E. Het is tijd voor radicale veranderingen -publiek moet helpen bij vaststellen onderzoeksagenda. Medisch Contact 2006;43.
Download Full Text at: http://medischcontact.artsennet.nl/
23. Buckley B, Grant A, Firkins L, Greene A, Frankau J. Working together to identify research questions. Continence UK 2007;1(1):76-81.
Download Full text at: http://www.lindalliance.org/pdfs/JLAContinenceUK.pdf
Background
The James Lind alliance (JLA) was set up in 2004 to encourage patients, carers and clinicians to work together to ensure that uncertainties which affect clinical practice are addressed by research. This alliance was established because concerns were growing that most research conducted does not adequately address problems that are of importance to patients. Public is lacking influence and follows an agenda set by the industry; research into commercially developed drug-based therapies far-outweigh research into other forms of therapy. JLA wants to bring together at least 1 patient organization and 1 clinical organisation to work as partners. In this way treatment uncertainties and questions that are of practical importance can be identified and prioritized. JLA has set up partnerships in the areas of asthma, epilepsy, diabetes and rheumatoid arthritis.
Methods of the working partnership on urinary incontinence that began in 2007 consist of 5 phases:
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Initiation phase in which potential partner organizations and representatives are identified.
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Consultation phase in which questions and uncertainties are identified trough existing sources and consultation with patients, carers and clinicians.
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Collation phase in which a search trough literature is done to see if any of these questions already have been answered. The issues that remain unanswered will be made into clear questions.
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Prioritisation phase in which unanswered questions are prioritised by parties trough consensus.
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Reporting phase in which findings will be reported to NHS Health technology assessment (NHS HTA)programme and the Medical research council (MRC) and published.
Website James Lind Alliance: www.lindalliance.org
24. Clark M, Glasby J, Lester H. Cases for change: User involvement in mental health services and research. Research Policy and Planning. 2004;22(2).
From invoNET database: http://www.invo.org.uk/Resources_Results.asp?val1=all
Download at: http://www.scie-socialcareonline.org.uk/repository/fulltext/96255.pdf
Aim
This paper describes the authors' experiences of involving mental health service users in research on adult mental health services.
Findings
Benefits for the service user researcher:
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Using skills that were thought to have been lost.
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Developing new skills and knowledge.
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Greater self-esteem and confidence.
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Social interaction.
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Earning money.
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Making use of users' experience and knowledge.
Impact on the academic researchers:
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more thought given to service users needs particularly in terms of language used in reports
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assumptions, attitudes and values were challenged.
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However, the pressure of work did lead to the service user researcher becoming unwell during the course of the project. This led the researchers to question whether they had provided adequate support.
25. Griffiths KM, Jorm AF, Christensen H. Academic consumer researchers: A bridge between consumers and researchers. Aust N Z J Psychiatry 2004;38(4):191-6.
From invoNET database please click here: http://www.invo.org.uk/Resources_Results.asp?val1=all
Download at: http://www.ncbi.nlm.nih.gov/pubmed/15038796
Aim
This paper describes the contributions that consumers, particularly academic consumers, can make to mental health research. It is based on a literature review and reflection. The authors argue that academic consumers offer all the advantages of involving lay consumers as well as extra benefits.
These include:
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Acceptance as equal partners by other researchers.
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Research skills.
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Access to research funding.
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Ability to communicate findings to the research community.
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Ability to influence research policy & culture.
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Potential to facilitate lay involvement.
They conclude that academic consumers could therefore help to bridge the gap between researchers and consumers as well as reducing the stigma of mental health problems.
26. Minogue V, Boness J, Brown A, Girdlestone J. The impact of service user involvement in research. Int J Health Care Qual Assur 2005;18(2):103-12.
From invoNET database: http://www.invo.org.uk/Resources_Results.asp?val1=all
Download at: http://www.ncbi.nlm.nih.gov/pubmed/15974504
Aim
To examine the development of one service user and carer research group in a mental health Trust.
Findings
The benefits for consumers were found to be:
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Gaining knowledge and experience.
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Improved sense of well-being, self esteem and confidence.
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The Trust gained from hearing the service user perspective and maintaining a user focus.
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They reported changes in research design and methods as a result of user involvement and the following changes to services:
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Changes in information given to service users.
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Changed content and wording of information packs and leaflets.
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Continuation of a service.
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27. McCormick et al. Public involvement in breast cancer research: An analysis and model for future research. International Journal of Health Services (2004), 34(4), pages 625-646.
From invoNET database: http://www.invo.org.uk/Resources_Results.asp?val1=all
Download at: http://www.ncbi.nlm.nih.gov/pubmed/15560426
Aim
This paper reviews the development of public involvement in health research; describes three research studies where breast cancer activists became actively involved and outlines a model of lay involvement in research based on this analysis.
Findings
The authors suggest that the potential challenges to public involvement in research fall into three categories: relationship issues, methodological issues and social, political and cultural issues.They describe how women affected by breast cancer had an impact on research commissioning through:
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Using political connections and activism to campaign for and secure government funding for research.
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Influencing the research agenda.
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Influencing how the research was carried out.
The authors describe the impact on activists:
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Their understanding of environmental causation and research methods increased.
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Their feelings about researchers changed from fear to respect.
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Both activists and researchers described a feeling of empowerment that resulted from the collaboration.
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Both groups felt that public involvement pushed the research forward more quickly.
The authors reflect that "public involvement created an articulated value structure that made research relevant to women with breast cancer." They argue that public involvement reduces distrust of science on the part of the public and increases public accountability. Collaboration between researchers and activists led to the establishment of Project LEAD, a National Breast Cancer Coalition project that trains activists in breast cancer research. They go on to describe a model for public involvement in research, which covers principles (e.g. openness), tasks (e.g. training activists) and structure (e.g. lay people in positions of governance).
28. Langston AL, Mccallum M, Campbell MK, Robertson C, Ralston SH. An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial. Clinical Trials. 2005;2(1):80.
From invoNET database: http://www.invo.org.uk/Resources_Results.asp?val1=all
Download at: http://www.ncbi.nlm.nih.gov/pubmed/16279582
Aim
To work closely with the National Association for the Relief of Paget's Disease (NARPD) in the PRISM trial (a randomised trial of intensive versus symptomatic management).
Findings
There were many advantages to working in partnership with NARPD. Most importantly all the participants gained a sense of ownership of the trial. This led to very high response rates to questionnaires which improved the quality of the trial data. The partnership also helped to improve recruitment and the quality of patient information sheets. The authors recommend this approach is used in other trials as a way of improving the information for participants and recruitment. However, there are resource implications for both parties.
29. Hanley B, Truesdale A, King A, Elbourne D, Chalmers I. Involving consumers in designing, conducting, and interpreting randomised controlled trials: Questionnaire survey. BMJ 2001 Mar 3;322(7285):519-23.
Download Abstract at: http://www.bmj.com/cgi/content/abstract/322/7285/519
Aim
This study was done by consumers in NHS research to assess if and in what way consumers are involved in the work of clinical trial coordinating centres in the UK.
Findings
Consumers were most commonly reported to have been involved in drafting or reviewing information for patients. In 22 trials they promoted recruitment and in 19 they were on the steering committee of the trial. Respondents noted some positive impact and 9 noted some negative impact. Noted benefits were that input from consumers helped refine the research question, improved the quality of information provided to patients and help make trials more relevant to consumers needs. Furthermore involvement was reported to benefit recruitment of trial participants and feeling of ownership of the trial. Negative comments were concerning conflict of interest between need of the trial and patients’ group, the representativeness of the consumers who participated and a longer duration of the trial.
30. Petereit DG, Burhansstipanov L. Establishing trusting partnerships for successful recruitment of american indians to clinical trials. Cancer Control 2008 Jul;15(3):260-8.
Download Full text at: http://www.moffitt.org/CCJRoot/v15n3/pdf/260.pdf
31. Donovan J, Mills N, Smith M, Brindle L, Jacoby A, Peters T, Frankel S, Neal D, Hamdy F. Quality improvement report: Improving design and conduct of randomised trials by embedding them in qualitative research: ProtecT (prostate testing for cancer and treatment) study. BMJ: British Medical Journal 2002;325(7367):766.
From invoNET database: http://www.invo.org.uk/Resources_Results.asp?val1=all
Download Abstract at: http://www.ncbi.nlm.nih.gov/pubmed/12364308
Aim
To examine the impact of qualitative research on the design and conduct of a controversial randomised clinical trial for prostate cancer.
Findings & Recommendations
Changes to the way the information about the trial was presented and the way different elements were described increased the men's understanding of the nature and purpose of the trial. Recruitment rates increased from 40% to 70%. The authors recommend that similar approaches are used more widely, especially when a trial is thought to be difficult to carry out.
32. Collyar D. How have patient advocates in the united states benefited cancer research? Nat Rev Cancer 2005 Jan;5(1):73-8.
Download at: http://www.nature.com/nrc/journal/v5/n1/abs/nrc1530.html
Summary
Cancer patient advocates represent those affected by cancer and have a broad view of cancer research. They are involved in many diverse cancer research committees, where they can help tackle old problems from new perspectives that often differ from government, academic, medical and scientific approaches. In this role, patient advocates have aided the development of educational dialogue between investigators and patient communities and assisted in streamlining cancer research policies and clinical trials.
33. Wootton IM, Wood V, Cook F. Who wants expert patient programmes for chronic mechanical spinal pain? an investigation into the value of, and recruitment to, an expert patient programme as part of the physiotherapy management of chronic spinal pain. Physiotherapy 2008;94(1):78-84.
Download Full Text at: http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7CVK-4NH6CVX-
34. Fox D. Testing treatments: Better research for better healthcare Imogene Evans, hazel Thornton, and Iain Chalmers. PROJECT HOPE; 2008.
Download Book at: http://www.jameslindlibrary.org/pdf/testing-treatments.pdf
35. Kent A. Patients + research = result! the role of patients and their interest groups in biomedical research. EMBO Rep 2002 Aug;3(8):707-8.
Download at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1084219
Background
Patients are one of the best advocates because they belong to the “club” affected by a disease and experience the consequences. The only way out of this club is trough research. It is especially difficult for people (and family of) with rare genetic disorders, since society does not pay attention to these disorders. Families with the same disorder may seek each other, initially for social support. Later this can change into the desire for change; this is often done trough funding of research. Previously the role of patient organisations outside of funding remained passive. But now there is need to evaluate whether research proposals are adequate for the patients.
Best practices
Patient organisations have always had a very important role in lobbying and with it changing the law. A good example of this lobbying is the introduction of the Orphan Medicinal Product Regulations in the EU. Patient organisations have become more engaged in the whole research process. An example is the UK Alzheimer’s Society that peer-reviews grant applications. Applicants must write their proposals in a way that can be understood by the members of this lay panel. Patient organisations now possess a very valuable source of knowledge, which can be: information on how a certain condition affects peoples’ daily lives, but also on databanks of DNA samples, cells and tissues.
36. Wright D, Corner J, Hopkinson J, Foster C. Listening to the views of people affected by cancer about cancer research: An example of participatory research in setting the cancer research agenda. Health Expect. 2006 Mar;9(1):3-12.
Download Abstract at: http://www3.interscience.wiley.com/journal/118575856/abstract?CRETRY=1&SRETRY=0
37. Fisher M. The role of service users in problem formulation and technical aspects of social research. Social Work Education 2002;21(3):305-12.
From invoNET database: http://www.invo.org.uk/Resources_Results.asp?val1=all
Download at: http://cat.inist.fr/?aModele=afficheN&cpsidt=13757033
Summary
This paper argues that if research is to be relevant to the issues faced by service users, they must be actively involved in this research at all stages. Fisher draws on a range of research projects to expand on his argument. He sets out some distinctions in the meaning of user involvement in different models of social research. He argues that more traditional methods - such as consulting with service users and participatory research - are not enough to respond to the demands of service users for "genuine involvement in research design". Instead, he calls for a three-way relationship between the practitioner, research and the service user.Fisher draws on a range of examples of user-led and user-controlled research to suggest that problem formulation benefits from user involvement. He gives illustrations that show how service users have challenged the assumptions made by researchers and research commissioners.He also argues that user involvement can help researchers to access the 'right people’; giving examples of how user controlled research can improve response rates. Fisher goes on to describe how the quality of interview data may be improved if service users act as interviewers. Fisher moves on to consider how user perspectives can alter the research approach to outcomes, outlining three principles for user perspectives on outcome measurement. Finally, he argues that service users can improve the analysis of qualitative data, again by drawing on a number of examples.
38. Brown K, Dyas J, Chahal P, Khalil Y, Riaz P, Cummings-Jones J. Discovering the research priorities of people with diabetes in a multicultural community: A focus group study. The British Journal of General Practice 2006;56(524):206.
Download at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1828264
Aim
To find out the research priorities of people with diabetes from an inner city community and compare these with current expert-led research priorities in diabetes.
Findings
Nine main themes equating to research priorities were identified. Within these themes, information and awareness, service delivery and primary prevention of diabetes emerged as the main factors. There were no science-based topics and there was more emphasis on culturally influenced research questions, which differed from recent Department of Health priorities. There were several themes about service delivery, patient self-management and screening and prevention of diabetes that overlapped.
Conclusions
There is some divergence between expert-led and patient-led agendas in research about diabetes. Patient perspectives have a significant influence on research priorities, and there are likely to be several different patient perspectives.
39. The Learning Difficulties Research Team with assistance from Bewley, C. & McCulloch, L. Let me in - I'm a researcher! getting involved in research. London: Department of Health 2006.
Download Full text at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4132916
Aim
This research aimed to find out what 12 research teams, funded by the Department of Health as part of the Learning Disability Research Initiative, had done to actively involve people with learning difficulties in their research. The research and management was undertaken by a team of people with learning difficulties.
Findings and recommendations
Of the 12 research projects, only two employed people with learning difficulties. The report identifies a number of barriers to the employment of people with learning difficulties as researchers. All but one of the projects had advisory groups which included people with learning difficulties. Some of the advisory groups were more successful than others in effectively involving these people. The authors of this report found examples of "really excellent involvement" and of accessible information. But they also found that people with learning difficulties were usually involved in research in limited, traditional and unimaginative ways.
Recommendations to involve people more effectively
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Done over a longer period.
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Resourced effectively - in terms of money, support and team working.
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Reflecting on doing the research, the authors remarked that being user researchers improved the quality of the project by covering different questions and getting different information.
However, they identify two issues for people with learning difficulties acting as interviewers:
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They were concerned that they might know someone they interviewed
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They might get their own experience mixed up with that of the people they were interviewing.
The authors reflect that they have learned a lot and gained from their involvement, even though at times it was difficult. They call for more opportunities for people with learning difficulties to do research.
40. Thornton H, Edwards A, Elwyn G. Evolving the multiple roles of 'patients' in health-care research: Reflections after involvement in a trial of shared decision-making. Health Expect 2003 Sep;6(3):189-97.
Download Abstract at: http://www3.interscience.wiley.com/journal/118896905/abstract
Aim
This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases.
Findings
Consumers and patients contributed to several stages of the research from inception and design, securing of funding, implementation of the protocol, and interpretation and dissemination of the findings. 'Patient involvement' research initiatives that include an equally wide variety of 'user' participants as 'health-professional' participants, accountable to a 'Health in Partnership' funded project, require a user-led viewpoint to be presented and disseminated.
41. Marsden J, Bradburn J. Patient and clinician collaboration in the design of a national randomized breast cancer trial. Health Expectations 2004;7(1):6-17.
Download at: http://www3.interscience.wiley.com/journal/118808331/abstract
Aim
To show breast cancer patient involvement in the design of a national randomized trial of hormone replacement therapy (HRT) in symptomatic patients will increase accrual.
Findings
Focus groups demonstrated that the complexity of factors relating to trial participation was not just restricted to the research topic in question. Patient–clinician interaction provided a platform for negotiating potential conflicts over trial design and outcomes. Patient feedback suggested that mutually agreed priorities were accounted for in the trial design.
Recommendations
Clinical research planning should involve all research stakeholders at the outset. Quantifying the impact of patient involvement in terms of trial accrual may be too simple given the complexity of their motivations for participating in trials.
42. Hubbard G, Kidd L, Donaghy E. Involving people affected by cancer in research: A review of literature. European Journal of Cancer Care 2008;17(3):233.
Download at: http://www3.interscience.wiley.com/journal/119410965/abstract
Findings
The literature shows that people affected by cancer, particularly women with breast cancer, have been involved in a range of research programmes, projects and initiatives especially in the USA, UK, Canada and Australia. Their involvement has impacted upon research design, accrual and response rates.
Recommendations
There is increasing recognition of the need for an infrastructure, including formal recruitment procedures, training and mentoring, to support an agenda of involvement and a need to challenge the ethos of traditional research, which does not easily lend itself to this agenda. Further critique of the role of 'experiential knowledge' in research is required so that researchers and people affected by cancer can work in partnership.
43. Ali K, Roffe C, Crome P. What patients want: Consumer involvement in the design of a randomized controlled trial of routine oxygen supplementation after acute stroke. Stroke 2006 Mar;37(3):865-71.
Download Full text at: http://stroke.ahajournals.org/cgi/reprint/37/3/865
44. Rose D. Collaborative research between users and professionals: Peaks and pitfalls. Psychiatric Bulletin 2003;27(11):404-6.
45. Oliver S. Patient involvement in setting research agendas. Eur J Gastroenterol Hepatol 2006 Sep;18(9):935-8.
Download at: http://www.ncbi.nlm.nih.gov/pubmed/16894304
Summary
Patient groups already support funding of trials and patient recruitment for colitis research. Patient and public engagement in setting research agendas for health research more generally is growing, particularly about the effects of treatment. Patient priorities for colitis research span a wide range of interests. Opportunities exist to build on strategic alliances between patient groups, clinicians and researchers for more open debate about what research should be done and how.
46. Hewlett S, De Wit M, Richards P, Queste E, Hughes R, Heiberg T, Kirwan J. Patients and professionals as research partners: Challenges, practicalities, and benefits. Arthritis Care and Research 2006;55(4):676-80.
Download Full text at: http://www3.interscience.wiley.com/journal/112731417/abstract
Aim
Patient and consumer involvement is recommended but few practical experiments have been published. This article reports combined experiences of researchers and patients who are collaborating in rheumatology research.
Background
Patients have knowledge on personal experience of disease that could complement researchers’ knowledge. Patient perspectives are thought to enhance study design, practicality, recruitment, data interpretation and dissemination. Ways patients can be involved: identifying and prioritizing topics, reviewing grant applications, analyzing and interpreting data and disseminating findings.
In this study 3 challenges towards patient partnership were experienced:
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Enabling contribution which was hindered by communication and access issues.
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Need for change of traditional clinician-patient relationship to a partnership.
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Anxieties of patients of taking on a new role: concerns about the ability to contribute, value of contribution, unfamiliarity with technical terms, lack clarity about their role and not wanting to appear foolish.
FIRST-approach has been developed to tackle these challenges. FIRST stands for: Facilitate, Identify, Respect, Support and Train.
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Facilitate: inclusion and contribution. The principal investigator (PI) was found to be the key to facilitating the inclusion of partners in research. Partners should be included at early stages of protocol design.
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Identify: projects, patients, roles. Identify research projects which can benefit from partnership. Patients need in depth experience of the health issue concerned and also need to feel confident that their experience is important. A job description clarifies the role of the partner and creates realistic expectations.
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Respect: contribution and confidentiality. Respecting a partners contribution means acknowledging their value (for example by reimbursing expenses). The need to respect confidential information should be determined in an agreement.
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Support: communication and working. Initial input from PI was considered essential. Other good practices were: early feedback from PI, peer support.
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Train: research methods and processes. Because research is an unknown territory it was considered useful to provide training on quantative and qualative research methods, basic concepts of statistics and measuring outcomes.
Benefits experienced by researchers:fresh insights into issues, altered study designs, novel outcomes, traditional beliefs were challenged. Benefits experienced by partners: being able to contribute, being valued, creating something positive from their illness.
47. Andejeski Y, Breslau ES, Hart E, Lythcott N, Alexander L, Rich I, Bisceglio I, Smith HS, Visco FM. Benefits and drawbacks of including consumer reviewers in the scientific merit review of breast cancer research. J Womens Health Gend Based 2002;11(2):119-36.
From invoNET database: http://www.invo.org.uk/Resources_Results.asp?val1=all
Download at: http://www.ncbi.nlm.nih.gov/pubmed/12150500
Aim
To assess the impact of involving consumers in scientific review panels. The study focused on the involvement of survivors of breast cancer in the review of research proposals for the US Department of Defense Breast Cancer Research Programme in 1995.
Findings
In general the average voting patterns of the consumers were very similar to that of the scientists. While the study looked at the impact of involvement on overall voting of proposals, it did not examine the impact on how individual proposals were scored. So it is not known whether consumer input into the meeting had any impact on the scientists' scoring. Most scientists reported no effect. However, one scientist remarked that just having consumers at the table led him to consider the potential impact of each project on breast cancer more carefully.
48. Paterson B. Myth of empowerment in chronic illness. J Adv Nurs 2001;34(5):574-81.
Download abstract at: Download at: http://www.ncbi.nlm.nih.gov/pubmed/11380725
Aim
This article presents several findings of a study to investigate self-care decision making in diabetes.
Findings
Professionals may talk of empowerment, but then act according to a traditional biomedical model. Participants identified several covert and subtle ways that practitioners contradict their stated goal of empowerment in their interactions with diabetics. Participants revealed that despite their intention to foster participatory decision making, practitioners frequently discount the experiential knowledge of diabetes over time and do not provide the resources necessary to make informed decisions. Limited time is an important barrier towards participatory decision-making. And more research is needed into ways clinicians may impede participatory decision-making.
49. Redmond K. Collaboration with patient advocates: Unleashing a potent force. BJU Int 2003 May;91(7):590-1.
Download at: http://www3.interscience.wiley.com/journal/118853571/abstract
Abstract
The idea that patients should be involved in all levels of health decision making is growing. However there are still many barriers to cancer patient advocacy in Europe. Some of them are:
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Rareness of certain cancers.
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Paternalistic attitudes and resistance towards patient activism.
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Non-structurally organised patient organisations.
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Health care systems which differ immensely between countries.
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Language barriers.
In America, patient activism is more practiced. American HIV/AIDS patients were one of the First who began to advocate for change. In 1991 the First US patient organisation was founded: the NBCC national breast cancer coalition. They have been very successful at raising money for cancer-research and have raised over one billion dollars.
Recommendations
The author sees it likely that there will be an expansion in the number of cancer patient advocacy groups. But that has to be done with the aid of professional organisations to educate advocates.
Website NBCC: www.stopbreastcancer.org
50. Chambers R, OBrien L, Linnell S, Sharp S. Why don’t health researchers report consumer involvement? Quality in Primary Care 2004;12(2):151-7.
From invoNET database: http://www.invo.org.uk/Resources_Results.asp?val1=all
Aim
To find out if researchers publishing in international general medical journals had actively involved consumers in their research and to what extent they had involved consumers.
Findings
Consumer involvement occurred in six of the 200 papers. 132 authors replied to the survey and 54 said they had involved consumers. This mismatch occurred because some of the researchers had limited knowledge and understanding of consumer involvement and because some had not included details of consumer involvement in their original articles. A minority of the researchers were aware of the potential benefits of involving consumers.
Recommendations
The authors recommend that researchers and consumers need training and information about involvement as a substantial proportion of health researchers do not understand its meaning.
51. Gagliardi AR, Lemieux-Charles L, Brown AD, Sullivan T, Goel V. Barriers to patient involvement in health service planning and evaluation: An exploratory study. Patient Educ Couns 2008;70(2):234-41.
Download Abstract at: http://linkinghub.elsevier.com/retrieve/pii/S0738399107003497
Aim
Patient involvement in health service planning and evaluation is considered important yet not widely practiced. This study explored stakeholder beliefs about patient participation in performance indicator selection to better understand hypothesized barriers.
Findings
Interactive methods such as committee involvement, rather than single, passive efforts such as surveys were preferred. Health professionals recommended patients assume a consultative, rather than decision-making role. Older patients agreed with this.
Recommendations
Efforts to encourage a change in health professional attitude may be required, along with dedicated organizational resources, coordinators and training. Methods to engage patients should involve deliberation, which can be achieved through modified Delphi panel or participatory research approaches.
52. Telford R, Boote JD, Cooper CL. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expectations 2004;7(3):209-20.
Download Abstract at: http://www.ncbi.nlm.nih.gov/pubmed/15327460
Aim
To obtain consensus on the principles and indicators of successful consumer involvement in NHS research.
Recommendations
8 principles developed:
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The roles of consumers are agreed between the researchers and consumers involved in the research.
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Researchers budget appropriately for the costs of consumer involvement in research.
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Researchers respect the differing skills, knowledge and experience of consumers.
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Consumers are offered training and personal support, to enable them to be involved in research.
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Researchers ensure that they have the necessary skills to involve consumers in the research process.
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Consumers are involved in decisions about how participants are both recruited and kept informed about the progress of the research.
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Consumer involvement is described in research reports.
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Research ?ndings are available to consumers, in formats and in language they can easily understand.
53. Wright DNM, Hopkinson JB, Corner JL, Foster CL. How to involve cancer patients at the end of life as co-researchers. Palliat Med 2006;20(8):821.
Download Full Text at: http://pmj.sagepub.com/cgi/reprint/20/8/821
Aim
This paper discusses the experience of working with co-researchers to collect data from two hospices. It discusses practical, ethical and methodological challenges, including specific training needs and the emotional demands of conducting the research.
Recommendations
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The involvement of people receiving palliative care services in research should be supported.
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User representatives should be identified via various strategies rather than through a single approach.
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Extensive training needs to be provided and has to be flexible to meet patients’ specific needs.
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Take into account sensitive information in focus groups.
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Patients as co-researchers should be well informed.
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Ethical guidelines for patients participating in studies must apply to co-researchers.
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Emotional support should be provided for all co-researchers.
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A collaborative dynamic between the co-researcher and the experienced researcher should be adopted.
54. Williamson C. What does involving consumers in research mean? QJM 2001 Dec;94(12):661-4
Download Abstract at: http://www.ncbi.nlm.nih.gov/pubmed/11744786
Background
Since views of patients on research priorities are different to those of clinical researchers there is a need for agreement between the two parties. Since the effective lobbying strategies of the AIDS movement consumer bodies have become more active in lobbying and more involved in research.
So what does involvement mean?
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Involvement in research means active involvement, not simply a role as participants or subjects. According to the author involvement can take place in two main ways.
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Consultation; asking consumers their views.
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Partnership; shared decision making.
Most consumers can only speak from their own, personal view. Consumer groups have collective knowledge on their disease. But is this always representative for all the consumers?
Recommendations
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The right mix of consumers should be looked for.
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Inviting consumers should be done in a transparent manner.
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Special efforts will be needed to reach consumers who do not come forward readily.
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Give consumers confidence and enough knowledge of scientific concepts.
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Understanding between consumers and health professionals needs to develop.
55. Maslin-Prothero S. Developing user involvement in research. J Clin Nurs 2003;12(3):412-21.
Download abstract at: http://www3.interscience.wiley.com/journal/118847616/abstract
Aim
This article gives a reflection on the experience of user involvement in health care research drawing on current UK health policy documents and an examination of the factors affecting recruitment to breast cancer clinical trials, and contributes to the debate on recruitment to clinical trials.
Recommendations
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Health care policy alone is not enough: there needs to be a strategy for involving users more effectively.
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Training for users.
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Strategies for gaining access to users.
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User involvement must be genuine and address the issues most central to users’ concerns.
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Recognising that people have different de?nitions and understandings of participation, and that the impact of participation will vary across different groups and tasks.
56. Stiggelbout A, Kiebert GM. A role for the sick role. CMAJ 1997;157:383-9.
Download Full Text at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1243812/pdf/cmaj_157_4_383.pdf
57. Yunus F. Building a public-private partnership for comprehensive community cancer care: An interview with furhan yunus, MD. Journal of Oncology Practice;2(6).
Download at: http://jop.ascopubs.org/cgi/reprint/2/6/294
The First US advocacy Group was founded 20 years ago by cancer survivors, to establish the NCCS. They were directed at policy and legislative issues for cancer survivors and became one of the first to be invited to join the national cancer policy board. Since then patient advocates have earned respect by ensuring high quality care, raising money and heightening public awareness on their illness. There are indeed many different ways as to how patient groups can get involved in clinical trials. Mangialardi from the American cancer society Works as a patient-advocate in a research team to raise awareness on clinical trials, provide social support and raise funds. She says: “people need to understand what a clinical trial is and why it is important”. She Works within a research team within the Carle Cancer Centre. Training is important for patient advocates, in order to participate in research related activities. Mangialardi attended a 2-day symposium organised for advocates. Here researchers described the design of clinical trials, explained the science of cancer and advances in treatment options. Many educational programs for patient advocates exist. Another important role of patient advocates is to give the patient perspective in clinical trials. For this purpose workshops educating patient advocates are organised. In these workshops role playing on what a patient should ask about a clinical trial are done. Another assignment are protocol development groups. Patient advocates could form a bridge of understanding between researchers and patients.
58. Happell B, Roper C. Promoting genuine consumer participation in mental health education: A consumer academic role. Nurse Educ Today 2008 Apr 2.
Download Abstract at: http://www.nurseeducationtoday.com/article/PIIS0260691708000129/abstract
59. Caron-Flinterman JF, Broerse JEW, Bunders JFG. Patient partnership in decision-making on biomedical research: Changing the network. Science, Technology & Human Values 2007;32(3):339.
Download at: http://sth.sagepub.com/cgi/content/abstract/32/3/339
Background
Participation of end users in decision-making on science is increasingly practiced. In the biomedical field, however, end-user participation in decision-making is rare.
Aim
In this article, we analyze strategies for patient participation and conclude that these can hardly be regarded effective because they do not ensure patients' structural influence on decision-making. We identify obstacles for effective patient participation, which seem to reflect a resilience of the current biomedical decision-making network. We subsequently elaborate on the concept of transition management in the search for clues on how to breach this resilience and change the network toward the inclusion of patients.
60. Creighton SM, Minto CL, Liao LM, Alderson J, Simmonds M. Meeting between experts: Evaluation of the first UK forum for lay and professional experts in intersex. Patient Educ Couns 2004 Aug;54(2):153-7.
Download Abstract at: http://www.pec-journal.com/article/S0738-3991(03)00202-7/abstract