Patient And Public Involvement In Nhs Research Social Work Essay
Public and patient involvement (PPI) in health and social research is central to the Department of Health (2005, DH 2008). Policy in the UK encourages involving service users in research. Organisations such as 'INVOLVE' (UK), have been established to promote the involvement of users in all stages of research including the identification of topics, prioritisation, commissioning, designing research, managing research, undertaking research, analysis and interpretation, dissemination and evaluation (INVOLVE 2004). This is further supported by Department of Health (2006) in its publication 'Best Research for Best Health'.
Patients are increasingly being involved in health research as research partners (Abma 2009). Involving patients in early stages of research planning has become a priority in medical as well as political context. Involving patients and carers in research has been found to result in better clinical services (Ali K., 2006). Although involvement is increasing, it is still the case that many researchers do not involve patients/service users actively in all stages of the research process (Chambers et al., 2004).
It is widely accepted that involving patients as well as public in health care research can make significant contributions to the cause of such research, as it is intended for the benefit of the public at large (Oliver & Gray, 2006). It has been shown that the involvement of users has a positive impact on health research as the quality and standard of the research improves and becomes more relevant to the needs of the service users (Williamson et al., 2007). One of the purposes of involvement is to let the research be directed in the right way in order to meet the right needs. The users can engage in setting of research agendas, select research topics and set research priorities.
Through the R&D activities of NHS, which are actively supported by the Department of Health as part of their health policy, user involvement is increasing (Minogue et al., 2005). To this end, PPI in health research empower both individuals and communities as they are able to play a more significant role in determining the course of health research. It is also a way of democratising health research so that it generates optimum benefits in the realm of public health for all concerned.
Patient and Public involvement in NHS research is something that is to be encouraged in all phases of the health research process. Participation creates a meaningful opportunity for the whole spectrum of health beneficiaries like the service users as well as carers, who are indispensable to the R&D's core activities (Ali, 2006). Involving the public in health and social care research has been of interest nationally and internationally and is the core of the agenda on research policy (Tetley & Hanson, 2000). For instance in the United Kingdom, a key element of any research culture in the NHS is the conducting of R&D activities with the dynamic involvement of service users as well as certain hard to find social groups like the homeless (DH, 2005).
In U.K, most government sponsored key research funding programmes require all researchers to clearly demonstrate the way patients, as well as the public have been involved in the planning and execution of the proposal in order to award the necessary public funds for the research (NIHR). Despite such importance given to the public involvement in the NHS research, there are some issues that hinder the overall process of research design and execution. From the literature it is evident that there are challenges faced by the service users in involvement in the health research; issues such as communication and access issues, relationship between patients and researchers, consent, time and cost involved, the involvement of different stakeholders groups, reluctance of women in the research, the involvement of the children with disability, independent facilitation of the research as well as the understanding of the research methods used in health research (Barnes et al., 2006; Boote et al. 2010; Allsop et al. 2009).
Aim of the study
This narrative review aims to identify the published literature on the public involvement in NHS research in order to describe
â€¢ The definition and different levels of involvement
â€¢ To identify the barriers/challenges in PPI
Definitions and levels of Public involvement in NHS research
It is important to define certain terms like 'public' and 'involvement', and subsequently explain their significance in terms of the given context. 'Public' signifies all those individuals who make use of or have made use of health care services, carers and the relevant families, i.e., patients as well as potential patients. The term also covers the general public at large, community groups as well as organizations that represent those who take advantage of NHS services. The phrasal term 'patient and public involvement' is meant to convey research that is done with and by patients and the public, rather than to, for or about them (Buckland et al., 2007; INVOLVE 2009). And 'involvement in research' means a dynamic partnership between the patients/public or researchers in the process of health research. The scientific literature cited here points to the issues that are an integral part of health and social research.
There are three different levels of involvement while dealing with the PPI in NHS researches i.e. consultation, collaboration and the user control. Consultation involves seeking views and comments from the public for any particular research issue on health. Collaboration encompasses a much wider participation from the public. In collaboration, public is potentially involved in almost every stage of performing and conducting the research. In user controlled research, researchers are invited to participate, as the whole research is designed and developed by the users (Boote et al., 2002; INVOLVE 2009).
Important benefits emerge from user involvement in NHS research. In the UK, many premier clinical research funding organisations, such as the Medical Research Council, NHS R&D and INVOLVE are supporting user involvement (Staley and Minogue, 2006). Researchers have gone so far to say that involving public and patients in the research is becoming an inevitable political priority. It is the duty of the chief investigator of NHS Research Governance Framework to make sure that service users and other participants are involved in designing and conducting research activities whenever it is possible. The increase in PPL has led to this 'user-clinical researcher' relationship to become an integral part of the NHS mainstream agenda, which ensures that it is a concrete step and not just a "passing fad" (Staley and Minogue, 2006).
There are still individuals who fail to comprehend the necessity for involving members of the public in NHS research. They tend to think of this as a futile exercise (Elsayed, 2007). The NIHR as well as Research Councils promote, encourage and make it incumbent on NHS institutions to demonstrate clear evidence of PPI in every piece of research that they undertake (NIHR, 2008). The process benefits in two ways, one is strengthening democratic principles, and the other is service improvement (Steinbach R., 2009).
The NHS has seen many reforms and new developments since its conception in the mid twentieth century. Parallel reforms in involvement of the users have been going on in order to bring about a positive change that shapes the service inline with the needs and requirements of the users. But, as there are no specific groups of participants or users that can be called upon to be involved, there are certain issues and barriers that have to be overcome in order to achieve desirable outcomes (Saddler 2008).
Barriers in PPI
Many researchers have been openly doubtful and sceptical about the involvement of service users and carers in the research process (Rose 2003). Some of the researchers have even argued that involvement may drive health research towards incompetence (Rose 2003). This is because of the barriers that are associated with user involvement in healthcare research. Due to a great number of challenges facing the involvement, it is very important to get the maximum out of a user-researcher relationship. It may not be easy to find funds to develop a research program that involves users; therefore, involvement has to be meaningful and useful at the same time.
There is a difference of power in user-researcher relationship that may not be very beneficial for the research project. This emerges from the need for the users to be appropriately qualified in certain cases to be able to become valuable to a research process. Even after having requisite degrees, a service user may find it difficult to cope with the difficult parts of a research program. Rose (2003) has pointed out that sometimes there is a stigma attached to the research process due to the lack of appropriate qualification.
Even an experienced user will be considered to be junior to the professional health researchers irrespective of their relative levels of experience in the field. Williamson et al. (2007) has also stated that some of the conflicting ideas between the researchers and users can create tension in the team leading to negative atmosphere. Rose has also pointed out that in most of the health researches, the users involved in the research do not get paid despite substantial input. They only receive therapeutic earning, which may create a feeling of discrimination in the least. Williamson et al. (2007) has emphasised the importance of mutual and equal respect among all the researchers, user and professional.
One of the uncommon reasons, which has been pointed out by Rose (2003) is the conflict that professional researchers face between looking at a user as a patient and as a fellow researcher. This is duly exemplified by the case of psychiatric patients where the knowledge of the patients is likely to get downgraded due to their illnesses. Williamson et al. (2007) has stated that PPI is a time consuming process and the research team should work together - gradually - towards better results.
The review used the definition provided by INVOLVE and National Institutes of Director's Council for Public Representatives definition of public involvement in research. Based on the criteria set out by INVOLVE for doing research with or by public, this review aimed to actually identify the published papers regarding the barriers concerning public involvement in the NHS research.
A variety of search methods were employed to ensure all the relevant literature was identified. Most of the research literature was located on the Internet on various established health and social sciences databases. The major databases searched were: CINAHL, MEDLINE, PsycINFO, British Nursing Index and Cochrane databases. The articles that were deemed to be potentially relevant were identified by association with the titles and abstracts. The abstracts were scrutinised to see find useful suggestions and evidence of impact. Only papers published from 1995 to December 2010, and written in English were considered. As presently none of the databases have reviews reflecting the exact title being searched, the databases were searched using a range and combination of the key words, such as patient involvement, participation, service user participation/involvement, issues, NHS research and health research.
The search process can be described in three stages. The first stage can be considered to be the search for the articles from various databases using a number of defined keywords. The articles that seemed relevant by the titles were then put through the second stage. The second stage would be the review of the abstracts. After recognising the most relevant research and reviews, the articles were put through the final stage. The final stage consisted of reading the complete article and short-listing the most relevant and interesting ones.
The search resulted in numerous interesting studies on public involvement in
NHS research, however due to the specific interest in identifying the levels of user involvement and the issues with involvement in NHS research, only12 studies were identified for the purpose of the review.
After an extensive search and review of research literature, 12 studies were identified for the purpose of this review. Two main objectives were focussed on: Benefits of PPI and Barriers to PPI. The results were summarised in Table 1 and the results were explained under two heading: Benefits identified in PPI and Barriers identified in PPI.
Outline of the reviewed papers
Twelve peer-reviewed articles focusing on the involvement of service users in health research were identified and reviewed. All the articles reported public involvement in healthcare research undertaken in UK. Five articles reported cases of involvement of users in the NHS research (Oliver 1995; Oliver 1996; Minogue et al., 2005; Minogue and Girdlestone, 2009; Staley 2009), five reported cases of involvement of users in health research with references to NHS (Boote et al., 2002; Boote et al., 2010; Beresford 2003; Staniszewska et al., 2007; Staley and Minogue, 2006 ), and two (Hewlett et al., 2006; Smith et al., 2008) were focused on involvement of users in health research with no direct reference to the NHS.
Aims and Design
Benefits of PPI
Barriers/Challenges to PPI
Hewlett et al. 2006
-To report the combined experiences of researchers and patients who have been collaborating in rheumatology research
- To develop a model that could be used as a practical guide and to report the challenges and benefits of that collaborationÂ
Design: Qualitative study
Project benefited because partner:
-Peer reviewed grant application
-Clarified research question
-Extended patient cohort to include new group
-Suggested reasons for low recruitment
-Reviewed qualitative transcripts and categories
-Raised new outcomes of importance
-Renamed outcome categories
-Co-led investigator meetingÂ
-Being able to contribute and give something back, having something to offer that is valued,
-Creating something positive from their illness, gaining self confidence, friendship
-Empowerment andÂ sense of equal partnership
-Difficulties with access and communication (routine use of e-mail, conferences, and corridor meetings by researchers, which all excluded service users.
-Â Professionals also e-mailed consultation documents at the last minute and expected rapid responses, whereas partners needed time to review unfamiliar material
-Â Difficulties with altered roles (clinician- patient relationship changed as colleagues).
-Tokenism- some professionals may collaborate with partners for political correctness (e.g., to satisfy a research-funding body).
-Anxieties of taking on a new role:Â concerns about the ability to contribute, the value of any contribution, unfamiliarity with technical terms, lack of clarity about their role, and not wanting to appear foolish.
-Problems of confidentiality of patients.
-Problems of professionals making assumptions thatÂ service users lack knowledge, so their views are not taken seriously
-Greater understanding of rheumatoid arthritis and its impact
-Respect for partners'Â knowledge and commitment
-Beliefs and attitudes challenged
-New research areas opened up
-Effort rewarded and friendshipÂ
Staniszewska et al., 2007
To involve service users in the development of a research bid to examine parents'Â experiences of having a pre-term babyÂ Â
Design: Case studyÂ Â
The parent support group provided:
Advice on methods and ethical issues
Advice on timing of interview and focus groups
- Time and cost
- Language and methods used by the research
Boote et al., 2002
To critically review the state of knowledge regarding PPI and stimulate an empirical enquiry regarding consumer involvement in health research.
Design: Qualitative Study.
Users act as active negotiators for change and improvement
Would help to promote quality and relevant research of importance to patients and the carers.
The inclusion of social and emotional aspects of health in the research
Ensuring that the money is spent in the right way
- Consumers' expectations
- Overlapping roles (researchers are also consumers of health)
To find out how the heath service users can contribute to NHS research
Design: Qualitative study
- Identification of relevant research priorities and concerns
- Despite involvement, the voices of the users go unheard
- Too many canvassing opinions on healthcare research.
- The perspectives of the consumers may not be easily presented and may not always be satisfactory.
Minogue and Girdlestone, 2009
- Examining the role of PPI in NHS research and examine the nature of this involvement in three specialist mental health trusts.
- Discussing the value of PPI.
Design: Qualitative Case Study.
Adds value and is effective.
- inadequate funding/resources for such a research programme
- lack of funding/resources for user led research
- Lack of training for users and the quality of training (capacity building)
- Rate of transformation of research bids into projects
- Collectively derived outcomes are hard to find and hard to get.
- More focus on Randomized Control trials rather than qualitative research
- Ignoring small local concerns expressed by the users.
- the negative view about collaboration.
Boote et al. 2010
Reviewing the published research regarding the involvement of healthcare users to find the contributions made by the users and identify the barriers associated with it.
Design: Systematic literature search and narrative review.
- knowledge and experiential
Insights that can be brought to the research
- more relevant research outcomes
- provides the public (part-owners of NHS as taxpayers) a chance to exercise their right to be a part of the decision making
- tensions between different stakeholder groups
- the level of
understanding of members of the public of health research methods
- time and cost
- language and jargon.
Smith et al., 2006
Explaining the theoretical limitations to current understandings of the PPI in healthcare research.
Design: Multi-method review commissioned by the NHS Service Delivery and Organization (SDO) Research and Development Programme.
- Better quality research process leading to better health services
- Capacity to develop research relationships
- Ethical Issues
- Diversity (experiences and education of the users)
- Effective communication between users and researchers
Summarizing the findings from a literature review aimed at increasing the knowledge regarding the public involvement on health and social care research.
Literature was obtained from:
articles from the INVOLVE Coordinating Centre
Systematic search of electronic databases
- Public involvement increases recruitment to all types of research
- Increases the value of qualitative research
- Increases the value of the clinical trials
- Benefits the people involved as well as research participants
Positive impacts of public
involvement on researchers
- Better understanding and knowledge of the community
- Career benefits
- Challenges to beliefs and attitudes
- Emotional Burdens
- Work Overload
- Personal exposure through media
- Frustration at the limitations of involvement
Negative impacts of public
involvement on researchers
- Slower pace of research
- Requirement of more resources
- Distribution and loss of power
- Unwanted changes in the working practices
- Challenges to the values and assumptions of the researchers
Analyzing some examples of lay involvement in healthcare research process
Design: Qualitative study
Provides a wide array of views regarding the views and insights of the lay persons.
- Difficulties in identifying the right lay persons for the research
- The varying skills of the users
- Lack of resources
- Time taken for thought and discussions involving the lay persons and the researchers
Minogue et al., 2005
Examining the development of a service user and carer research group in a mental health trust.
Design- Review of literature on consumer involvement.
- review of research in South West Yorkshire Mental Health NHS Trust
- A skills audit and an analysis of the training needs of consumers.
Benefits primarily at personal level for the consumers:
- Increased knowledge
- Increased experience
- Improved sense of wellbeing
- Increased self esteem and confidence
For the trust or researchers, they get to have a better understanding of the perspective of the service users.
- Irregular distribution of work due to the limited and variable skills of the service users
- A limited number of service users
- Limited number of professionals involving service users in the research programmes
- Lack of proper training of the service users
Staley and Minogue, 2006
Explaining the importance of user involvement in more ethically sound research
Design: Qualitative study.
- Improves the quality of research
- Ensures that the outcomes are relevant to the service users and benefits them.
- Improves the way research is commissioned and prioritized. Consequently, it improves the way it is undertaken.
- Sometimes, obtaining ethical approval can be a hindrance.
- A change in either the system of ethical approval or the research has to change.
Exploring the challenges to user involvement in research
Design: Qualitative Study
- Can transform understanding of and approach to healthcare research.
- Improve the quality of research
- Ethical and Ideological issues
- Inequality in the distribution of funds for the user-led researches
Table 1: Summary of papers addressing public involvement in health research.
Benefits Identified in PPI
The study has shed light on several benefits of PPI, which have been supported by various authors and researchers. Some of the key benefits that have been identified are common to several studies.
The primary benefit identified is that PPI accounts for attention directed at health care issues that are a top consumer priority. The perspective and standpoint of the service consumers are taken into account. As stated by Boote et al. (2010), Staley and Minogue (2006), Minogue et al. (2005), Boote et al. (2002), Oliver (1996) and Oliver (1995) the public and patient involvement in the health care planning and procedural aspect brings an uninhibited, personalized level of experience and knowledge to the table. Health care concerns and matters that are a priority to the recipients of the schemes are highlighted in this approach.
Another benefit highlighted is the conservation of economic funds and other resources with the increased degree of patient and public involvement (Boote et al., 2002). By negating the incidence of research programs that ultimately do not yield results and accurately identifying effective methodology with PPI professionals can prevent the loss of resources and money.
Another benefit of the PPI identified in the study is that consumers are motivated to promote issues that are of relevance to them and are hence able to endorse policies and proposals that are of direct bearing to the consumers, and in doing so the selection of matters on priority basis shifts from those of the professionals to those of the people they actually effect. This enabling role of PPI has also been stressed upon by Boote et al. (2010), Staley and Minogue (2006) and Boote et al. (2002). The involvement of the public in any public funded research program that concerns the health services that affect the public and may have any bearing upon them is mandatory, based on the simple principle of that the people should play a role in matters that concern them.
PPI has also been identified as a tool for bridging the gap between mainstream society and members of marginalized society groups. PPI can be used as a tool to enable members of disadvantaged fractions of society and minority groups to play a more active and involved role in decision-making processes and thus integrate into the mainstream society and play an increasingly active role. As stated by Boote et al. (2002; 2010), PPI allows professionals to reach out and build connections with the marginalized society groups.
The ease in communicating research findings and information amongst peers and the increased ability to recruit peers and participants to the programs is another benefit of the PII. Information dissemination amongst peer groups is one of the main advantages of the PII and it allows for an increased level of awareness, enthusiasm, participation and responsibility-sharing. As stated by Boote et al., (2002) and Oliver (1995), PII allows people to engage other interested individuals and broaden the scope and potential of research by doing so and also involving more and more of the public that is affected by the research into the research process itself.
PII provides the added benefit of dealing with people and their opinion in a direct, one-to-one manner. Consumer groups that participate in the research process are not only in a position to offer insight into the matter but can also provide direct contact and access with the wider public. Involved consumer groups act as a barrier-bridging tool between the professionals and the hitherto untapped public. (Boote et al., 2010; Staley 2009; Oliver 1995).
The PII has also been identified to offer the potential of being of benefit to all involved parties, from the professionals and the participants of the research to the people who ultimately stand to be affected from the findings and their implications as gotten from the research. Apart from helping professionals and participants identify new aspects of research and fine-tune them for effective application and output, PII actually helps achieve authentic positive results for the people the research aims to help (Staley 2009; Staley and Minogue, 2006).
Another benefit identified by this study is that PII helps to augment improvement in all aspects of the research quality, ranging from the manner in which the research aims are prioritized, to the methodology of the research and the manner in which the information is disseminated finally amongst audiences. Since a variety of aspects at different stages of the research are improved (Staley and Minogue, 2006) it can be asserted that PII offers overall worth and effectiveness (Minogue and Girdlestone, 2009).
Barriers Identified in PPI
The Department of health, along with a number of supporting organisations and authors have commented upon the importance of the involvement of service users in the healthcare research. Despite the high level of importance attached to it, PPI faces several barriers or challenges as were identified in the study. The identified barriers have been listed in Table 1. At least seven of the twelve authors, whose papers were reviewed in this study, have pointed out the lack of resources available for the user-led researches and researches where extra resources are needed due to involvement of new (user) research members (Staniszewska et al., 2007; Boote et al., 2002; Minogue and Girdlestone, 2009; Boote et al. 2010; Staley 2009; Oliver 1996; and Beresford 2003). Involving consumers in healthcare research subsequently means increase in the need of resources allocated for a project.
Four authors (Minogue et al., 2005; Oliver 1996; Boote et al. 2010; & Minogue and Girdlestone, 2009) have stated that the lack of skills or proper training is one of the main challenges to be overcome concerning user involvement in healthcare research. The inadequate knowledge of the research techniques usually hampers the progress of the research team. The other major barriers identified are: Irregular distribution of work in the research team (Minogue et al., 2005), increase in time taken to discuss and reach a final conclusion (Oliver 1996; Staley 2009; Boote et al. 2010; Staniszewska et al., 2007), limitation of role in the research for the users (Staley 2009), ethical issues (Smith et al., 2006; Beresford 2003; Staley and Minogue, 2006), and change in the beliefs and attitudes (Hewlett et al. 2006; Staley 2009). The other barriers and challenges are summarized in Table 1.
Five main barriers have been identified from the study:
1. Increased Costs/Resources
Involving consumers in healthcare research subsequently means increase in the need of resources allocated for a project. The travel and subsistence expenses have to be paid with the occasional childcare and carer's expenses. Due to the great diversity of backgrounds people come from, their inability to understand the research methods and topic may require special training or education that may enable them to gain the appropriate scientific skills to carry out the research. Consumer involvement can easily make a research project more expensive by simple addition of member into the team.
2. Increase in time taken to complete the research
Public involvement in health research has cost and time implications. Inadequate funds may lead to delay in the start of the project. Even a particular activity can be hampered during the research process due to unavailability of sufficient resources. The people who are not professional researchers may also require time to get used to researching skills and may also have to attain training under a mentor. This can be aggravated by the fact that more people mean more opinions, which in turn means a greater discussion time. Due to conflicting interests at times, the outcomes may take a long time to be realised.
3. Lack of proper training/skills
Healthcare research is a very important aspect of building a better future in health services. The quality of research is directly proportional to the quality of results obtained. Therefore, it is necessary that all the people involved in the research have a certain level of expertise to carry out the research. It is seen that sometimes lack of proper training and skills makes it difficult for the users to become an integral part of the research and contribute. The users need to have a certain level of expertise in the field of research, such as understanding of research methods like qualitative, quantitative, RCTs, and others. For user led research, it is a must that the users are well acquainted with the methodology before attempting to research.
4. Loss of power for the researchers
Involvement of service users inevitably leads to their decision making space in the research team. While it is good for the team as the outcomes will be more relevant to the needs of the service users, but at the same time it is not comfortable for the researchers who lose a certain amount of power from making decisions and have to comply with the advices and requirements of other party in the team. This can lead to jealousy and lack of motivation in the group.
5. Language and communication
It is very important for the members of the research team to communicate and co-ordinate with each other. For that matter, it is essential for them to understand each other. The medical jargon and scientific language used in the research may be difficult to understand for a layman or a service user. This can create a communication void between the users and the researchers. For the best outcomes, it is important that the researchers understand what the users want and incorporate that into the research to come up with best possible outcomes.
Discussion and Conclusion
All the authors of the reviewed papers have stated the importance and benefits of the user involvement in healthcare research. The importance of PPI can be understood by the emphasis laid on it by the Department of health in terms of the health policy. In the recent years, more attention is being paid to public involvement in healthcare research. A number of studies have been undertaken in order to obtain evidence to demonstrate the value added by PPI and where it brings the greatest benefit. The involvement of consumers in NHS research has been given a lot of prominence, however, only a very small fraction of health research at NHS is user-controlled; in maximum number of cases, patients and consumers do not have a lot of say in how the research has to be prioritised or undertaken (Boote et al., 2002).
The importance of research is fundamental to NHS and the department of health. The emphasis on user participation has meant a step forward in the direction of a better medical future. The users are involved in the research programs at various levels in the NHS. Minogue et al. (2005) has identified five levels of consumer involvement in NHS research:
ii. collaboration or partnership;
iv. user-controlled or user-led; and
v. user dissemination.
Along with the department of health, many groups have come up to promote user involvement in health research. INVOLVE is a well-established and well-known group and is supported by the NHS Centre for Involvement. The example of user involvement across UK and NHS are many (Minogue and Girdlestone, 2010). User involvement in NHS research can be exemplified by: review of research, preparation of research bids, user led research, collaboration, discussion over research design and methodology, and dissemination.
Despite the known benefits, the involvement still remains fragmented. The willingness and expertise of involving the public in health research still lies in the hands of specific individuals in the Research and Development department of the NHS and similar research networks. The patient and carer involvement is expected to be beneficial for the healthcare service but there are numerous barriers that need to be considered. In order to face these challenges and overcome these barriers, additional resources will be required coupled with a determined plan of action. There needs to be more user led research and better involvement of the public in NHS research.
User involvement is a very important international topic and research agenda. The study has highlighted the barriers and challenges facing the involvement of users in health research at NHS. The barriers need to be fully recognised and overcome with a meticulously chalked out strategy and appropriate resources in order to secure a safe future and a better and healthy tomorrow.
Limitations and Implications
It has been mentioned previously in this study that one of the premier hurdles the researcher faces in the task of studying the topic of patient and public involvement in medical research arises from the lack of source material on the topic itself and the less than satisfactory level of specialized attention that has been given to the specific topic till now. There is a noticeable dearth of papers and articles on the topic of patient and public involvement in clinical research in all the leading health databases and this problem is further complicated by the fact that none of the databases as of yet are assigned a subject heading that particularly deals with the matter of patient and public involvement and participation in the specific field of research and study. It is out of this lack of specialized marking that the proposed lack of material might arise, since one has to take into account that there might be material on the subject but it is yet to be identified and categorized as a separate and specialized source of information and matter of study. Due to the lack of clear markings it is possible that research papers concerning the subject of public participation in the field of primary health care research planning and design processes might have been missed during the literature search and review.
Another limiting factor arises out of the literature search being confined to the English language. Given that other languages could not be included in this review and research; there stands a possibility that the researcher has been unable to review potential papers that may be available in other languages.
A third limiting factor is that this study has been confined to conducting a literature review of only papers and articles that have been published. The researcher acknowledges that while reviewing only published articles, the potential information withheld within other data and literature may have been overlooked. The researcher also acknowledges that extensive data on the topic of patient and public involvement and participation in research and study is to be found in reports, review accounts and other sources of information to be termed as 'grey literature'.
The fourth and final limitation of this research study is that it has primarily been based on published case studies that are organized to review only a specific stage of the public involvement in research design process. This research offers a qualitative review of the existing case studies by focusing on a singular level: the design stage of the process of primary research. By doing so, this research has not taken into account the quantitative aspect of the role of public involvement in research design at a variety of other stages and levels in the research process. The researcher notes that the decision to exempt studies of other stages and levels in the process was a deliberate choice. This review has been designed as a narrative based on a particular theme of only one stage of the process and by excluding papers that contain information on specific other/ or all stages of the process, the researcher has been able to focus solely on a single stage and examine all aspects of it. The decision to exclude papers that study all stages of the process has been taken because these papers are usually short on space and hence do not provide an exhaustive account of the various stages and are only able to touch upon the different levels of people participation in research design.
It is important that the benefits of the health research effectively translate into practice for it to have any significance. The involvement of users in NHS research is an important step forward for a better healthcare service. The people can be involved in the research process at more than one level but getting it into practice is not that easy. Developing proper strategies and evaluating various plans-of-action is complex as well. The involvement of users will definitely benefit the researchers and the other users as well. A focussed approach is required to instigate an era of user-involved-research to make the final product user friendly, highly effective and highly sustainable.
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