Unit II Thought discussion

Tensions amongst medical and lay personnel within a trial steering committee defeat the purpose of involving patients and the public in research. The patient/lay person will not be able to contribute confidently and effectively without some basic training and support from the research staff. A member of the medical team could act as a mentor to the patient/lay person. Researchers and patients can work constructively together to develop practical and relevant research designs if both parties are realistic and respectful of each other.

With the emergence of patient support groups and the information that can be gleaned from the internet, patients are becoming more educated about their illnesses and can now be more proactive about their medical care. Doctors need to embrace the challenge of an educated public. Hopefully the days of medical hiararchy are in the past.

Joyce Niblack, a sufferer of a rare Myeloproliferative Neoplasm (MPN), essential thrombocythemia is an example of a patient advocate with a vision of doctor-patient collaboration. Myeloproliferative Neoplasms (MPNs) are rare blood cancers with an individual incidence of 2 in 100,000. Many primary care workers have no experience of this disease, which often leaves patients without a definitive diagnosis for many years. Joyce was a founder of MPN-NET support group and is recognised for creating online communities that help make a difference for people living with MPNs (1). MPN specialists are regular contributors to the MPN support forum, providing advise, reassurance and research updates.

Joyce collaborated effectively with the medical research community in designing and co-authoring an online internet study involving 1179 patients. The study established that MPN related fatique is the primary contributor to a poor quality of life. The results of this partnership provided baseline information on symptoms, and highlighted the need for the incorporation of quality of life assessment in clinical trials (2).

This group of patients and medical experts are an example of effective medical/patient collaboration, which I believe can be emulated in other disease areas.

1.           Joyce Niblack, Visionary in Patient Communities [Internet]. [cited 2016 Jan 26]. Available from: https://www.youtube.com/watch?v=JvK7EOYUkeI

2.           Mesa RA, Niblack J, Wadleigh M, Verstovsek S, Camoriano J, Barnes S, et al. The burden of fatigue and quality of life in myeloproliferative disorders (MPDs): an international Internet-based survey of 1179 MPD patients. Cancer [Internet]. 2007 Jan 1 [cited 2016 Jan 24];109(1):68–76. Available from: http://www.ncbi.nlm.nih.gov/pubmed/17123268

I think that there are many important factors that play a crucial role in the outcome of the interaction between the research team and P/P.
Some of them are:

• Defining expectations from the beginning, for both the research team and P/P: if this is not clear, frustration and tensions will surely arise
• Defining role descriptions and terms of reference
• Defining a mentor/person of contact for the P/P
• Training the chair of the group (e.g. TSC, TMG) on: how to involve P/P in the dynamics of the meetings, how to solve tensions, who to reach should problems arise, etc.
• Training the research team on PPI on: the role of the new member of the team, what expertise he/she brings to the team, how to communicate effectively with him/her, be respectful and flexible towards the new member, etc.
• Training of P/P on: the expectations of the research team, how to broaden their personal experience in order to contribute more efficiently, jargon, research, etc.

I think that both expertise complement each other and when the interaction between P/P and the research team is effective, research will definitely benefit. But people’s attitudes don’t change overnight and I can imagine that researchers can feel “invaded” until they understand or experience first-hand the benefits of including the patient expertise in their research.
Finally, as I stated above, in order to avoid tensions things should be planned from the outset and not only the P/P but also the research team should be educated on PPI.

Within the TSC, tensions can be managed by researchers consciously creating an environment where patients/public feel valued and respected. This involves open/honest communication and avoidance of medical and scientific jargon, without seeming patronising. Otherwise, as Maeve pointed out, the point of PPI is defeated and patients feel dissociated and disempowered. Although not in the context of PPI, it was interesting (albeit quite troubling) to read Olivia’s blog (1), as she sadly gives many examples of how disempowered patients can feel when not listened to by healthcare professionals. At the core of research is the intention to benefit patients/public in the long-term, therefore patients have a right to guide the direction of this research and ensure public funds are spent wisely. I think it is important and helpful for patients/public to be involved in research steering groups to, if nothing else, ‘ground’ researchers/healthcare professionals by remind them of the real long-term aim of their research and the people they intend to benefit.

1. https://totallyanonymousasthma.wordpress.com/

Research Steering Committees in themselves already have tensions and agendas amongst the health care professionals, especially in a multinational trial. Sometimes each researcher has an agenda for themselves and I think the addition of a lay PPI member will be good to as Gillian points out "ground" the researchers. I think it is a very good idea to have a researcher who would buddy with the PPI person to not only explain the trial but also to introduce the Steering group, their expertise and their agenda. I think having a good chairperson who believes the PPI's perspective is important will enable open frank discussions in an all inclusive manner.

Lay and medical construct of illness is nearly always different . I work in a cancer hospital and this disconnect is often seen between medical personnel and patients/families when they are making decisions regarding futility of care. For physicians this is almost always decided on physiological basis whereas for families often futility of care is not decided solely on the basis of medical benefit and for whom letting a loved one go involves complex emotions. Sometimes this leads to a conflicts between physicians and patients/families . This is usually resolved via a clinical ethics consultation with a team of people who help both parties understand each other better . Reading about an involvement coordinator I felt that this persons role . would be somewhat similar in the context of a research study.

Involving people in a TSC would help us review research from the 'service user' perspective but the research teams often feel challenged by any opposing thoughts. In addition to training for both researchers and lay members and simplyfying the language in these meetings , I think an involvement coordinator can help be the connecting bridge between two opposing viewpoints and help bring out the best way forward.