Unit I Thought discussion

1. Once a patient or member of the public undergoes training, and becomes familiar enough with research to be substantially involved, their ‘lay’ status is compromised.

A layperson is defined as person who is not qualified in a given profession and/or does not have specific knowledge of a certain subject¹.

In medical research, this generally means someone who is not trained or experienced in undertaking medical research, or who does not suffer from the disease/syndrome being studied. They are taken to be general representation of the wider population, whose feelings, thoughts and views reflect wider society upon whom the research findings might have an impact.

Ives raises an interesting question over the transition from the classical view of a lay person, to someone whose status might no longer be interpreted as lay, simply because they have had training or experience, over and above that which might be expected from a member of the wider public.

Whilst it may seem instinctive to researchers that a lay person should be trained so that they can better 'understand' the research, this could potentially introduce concious/sub-concious biasing of the lay person, by altering their thought process through training and interaction with the research team.

Conversely it could be argued that a very basic training on medical research for any lay person is the minimum that they can expect, so that they have a basic level of understanding, and can actively contribute to the research. To avoid transforming the lay person into a researcher, this training must be constrained and detailed enough only to allow them contribute, without altering their views or thought processes. Striking an appropriate balance is likely to be difficult.

1. http://www.thefreedictionary.com/lay+person

2. I don't think a patient or member of the publics lay status is compromised should they receive training. I'm sure anyone of us has had training in an area that we're not familiar with; it hasn't made us experts in a subject but given greater insight and confidence to contribute effectively.

I have undertaken training as part of being a school governor but it only allows me enough inside knowledge to assess and critique as a lay person with some understanding of how a school works. For example, I can read and give independent feedback and suggestions on how to improve on school policy but I'm no expert.

2.

Donna gives a good example to help demonstrate that training does not compromise one’s role as a ‘lay person’. Contrary to what Ives suggests in this statement, training is required to qualify a person as a ‘layperson’ for the purpose of PPI. This sounds counter-intuitive, but I think that in order to effectively fulfil the desired role of the layperson and provide valuable insight, training is essential.

Provision of training also helps the patient/’layperson’ feel informed, included and helps give the confidence to express views, increasing interest and encouraging participation¹. Ill-informed public may feel disempowered and disengaged, particularly if expected to provide feedback within a team of experts (for example on a TSC).

PPI ‘training’ (as seen for example on the ‘Involve’² website) does not render a patient/member of the public qualified in a particular profession or a research expert by any means, therefore does not compromise their status as a ‘layperson’ based on the definition kindly provided by Adam. This training is essential in order to help overcome barriers to effective PPI, such as medical/research-jargon and inability to understand scientific terminology/research methodology.

1. Staniszewska, S., & Denegri, S. (2013). Patient and public involvement in research : future challenges Patient and public involvement in research : future challenges. 16(3). http://doi.org/10.1136/eb-2013-101406

2. National Institute for Health Research. (2015). Involve. Retrieved January 18, 2016, from http://www.invo.org.uk/

In the second claim one can sense the authors’ feelings towards PPI in research. They are absolutely against lay people participating in one particular stage of research, namely the conduct of research. What I understand is that the authors fear that patients/public may want to do research by themselves if they think they have sufficient knowledge. Therefore, they are presenting a full case in order to avoid this from happening.

I think that training does not compromise the lay status of a person, nor all the experience he/she may have with a particular condition. I absolutely agree with Donna that training gives a “greater insight and confidence to contribute effectively”.

Case study three (A survey of carers of people with heart disease) from the Involve webpage is a great example of a successful study conducted by a patient as a co-researcher who did an amazing contribution in every stage of the study: http://www.invo.org.uk/case-study-three-2/. This is contradictory to the authors’ second claim.  

As conclusion, I think that the type of research being done will definitely define the type of PPI necessary for it to be of the highest quality possible. Furthermore, a successful collaboration is more likely to happen if things are clear from the beginning, e.g. defined roles for members of the research staff and expectations for involved patients/public.

2. Once a patient or member of the public undergoes training, and becomes familiar enough with research to be substantially involved, their ‘lay’ status is compromised.

I must also agree with the majority of views here that just because a patient or a member of the public undergoes training to participate in a research group doesn't mean this negates their experience as a patient that they are bringing to the research. For example many of us need to be taught different methods of statistics brought to a project to fully understand the outcomes of a project this doesn't mean I no longer need a statistician!

2) Once a patient or member of the public undergoes training, and becomes familiar enough with research to be substantially involved, their ‘lay’ status is compromised.

Whilst i lean towards the majority view here; that training does not automatically compromise a member of the public's 'lay' status i think there is potential for this to occur.

Some training/induction is clearly required for some PPI/PPE activities to enable representatives to contribute appropriately. Too much training and i believe there is a real risk of losing the 'lay' perspective, eg. when 'lay' members move to the right of the spectrum in PPI and achive empowerment.

Surely becoming part of the trial team detaches the 'lay' member from the public in general and therefore compromises their 'lay' status?

In summary i would agree with Adam's comment regarding the level of training vs. lay status being a difficult balance to strike and that this is linked to the level of involvement/engagement being proposed.

BW
Stewart

• Once a patient or member of the public undergoes training, and becomes familiar enough with research to be substantially involved, their ‘lay’ status is compromised.

I would agree with the majority vote towards lay status being enhanced by training rather than being compromised.

The trade off is that  there is more benefit than the disadvantages.

This is now an informed but lay person who is knowingly and willingly involved who becomes more helpful compared with a totally uninformed lay person with whom it takes too long to explain and therefore improve communication.

The  trained lay person gets relatively  informed consent and appreciates the aim of the research.

All the reading resources provided on PPI demonstrate this as well as real life experiences. Allison has extensive experience with patient involvement and explained the importance and advantages of training lay people.

1. 1.       A fully democratic, cooperative model of patient and public involvement is an ideal that can never truly flourish, because the concept is not internally coherent

Ives et al make a strong case against a fully collaborative model of PPI highlighting a conflict between its moral and pragmatic stimuli and its implementation especially in the design stage of research. They also emphasize that training of ‘lay’ persons essential to their effective contribution in development and conduct of research has a negative impact on their ‘layness’ hence making the entire PPI enterprise ineffective. ¹

However I agree with the response by Stanley K which emphasizes that PPI is a complex context dependant activity and that research related training of lay persons for PPI does not turn them into research experts and their perspective still remains valid. They also go on to show how a trained lay ‘interviewer’ can actually help in collection of more rich data in qualitative research. Thus the core issue in my opinion is not the supposed lack of inherent coherence as it does not exist in many cases of PPI²

1. Ives Damery Redwod. PPI, paradoxes and Plato: who's sailing the ship?Journal of medical ethics.  2013;39(3):181-185
2. Kristina Staley. There is no paradox with PPI in research J. Med. Ethics 2013;39:3 186-187