Using Zoom: Views from Patient and Public Involvement Contributors (2022)

Article 17.07.2020

This blog is about our Public Involvement in Research group (PIRg) based at the University of Hertfordshire and its first use of Zoom for meetings. Overall, as members of the PIRg we feel positive about Zoom which has advantages of being good for those of us with health conditions who otherwise might not be able to join a face to face meeting, offers flexibility, reduced travelling and the benefits of being in the comfort of one’s own home. However, we also recognise that in virtual meetings you miss out on social contact, some of us will need technical support and Zoom may also make some people anxious. As public members we do not have access to the same technical support on our own computers as members of University staff. The issues of phone calls and internet costs was also raised.

The Public Involvement in Research Group formed in 2005 and meets face to face five times a year in a University building. We usually start around 11am and have a break for lunch and then continue until 2pm. We provide updates on the studies we have been involved in, researchers come and discuss their studies and feedback is given (to us) on changes researchers have made due to our input.

We were due to have a meeting on 30 April and the pandemic meant that all staff were told to work from home and cancel any face to face meetings. The chair and administrator assumed (incorrectly) that PIRg members would not want to hold the meeting online, such as by Zoom. However, one PIRg member persuaded the chair and facilitator that it would be good to go ahead with the already scheduled date and try to hold the meeting by Zoom. We shortened the meeting and started it earlier, so it ran for two hours instead of usual three and it was scheduled to start at 10:30am. The helpful guidance by National Coordinating Centre for Public Engagement (NCCPE) was used and people were offered the opportunity to have a “Zoom” practice beforehand with the administrator and two members took up the offer. One member who was unable to join fully by zoom due to audio and visual difficulties on her computer (she could see and hear us but we couldn’t see and hear her) joined the meeting by phone on loud speaker. The administrator facilitated her joining and kept her informed throughout, including the administrator raising her hand to obtain the Chair’s attention when the member wanted to speak or ask a question. There was a total of 11 PIRg members (out of a possible 13) at the first meeting and two had not used Zoom before. The majority had video cameras on, although one member chose not due to unstable internet connections.

(Video) Patient and public involvement in research and coproduction

Elspeth Mathie (from the Inclusive Involvement in Research theme, Applied Research Collaboration, East of England) suggested we share our experience;

Diane Munday: Foraround 15 years I have brought toUniversity of Hertfordshire Patient and Public Involvement (PPI) group, and more recently to its Service User and Public Involvement (SUPI) committee, knowledge about diabetes and long-term experience of caring for relatives with dementia and strokes. This has led torunning/working withinorganisations supporting people with these afflictions and enabled me to work in a variety of roles (e.g evaluator of bids, membership of management committees, co-researcher, lecturer and presenter).

Now in my ninetieth year and as a diabetic for the past fifty years I have been self-isolating although my youngest son and eldest grandson, who both live with me,have continued working during the pandemic; grandson from home and sonat his usual place of work. Although, as three generations in the same household we usually rub along together well enough, some problems have been magnified and others created - e.g. getting on each other’s nerves; keeping the premises clean and (hopefully) virus free.

I seem to be doing around the same amount of PPI work as previously but it is becoming increasingly difficult to motivate myself to get down to it and takes much longer to complete ; my brain has turned to mush, I am becoming lazy and have no sense of time passing despite not going off the premises and overall doing much less!

I take part in a number of Zoom meetings linked to different organisations and actually now find it much easier than driving to and attending meetings,, The technology works well except when grandson and I both have Zoom meetings in progress at the same time – our computers send messages about the line becoming unstable but so far have continued functioning.

Overall Ifindsome practical advantages of working this way (e.g no need for travelling and lipstick) but other “social” disadvantages (eg lack of contactand socialising with“outside” people). I have found that the Zoom meetings (the PIRg and SUPI) arranged by the University have worked very well (in no small part due to the meticulous preparationand organisational work of Julia (Chair) and Sonya (Administrator).

Wendy Ball, Wendy Ball, an Expert by Experience with PIRg since 2018. I live with my parents who are in their 70s and we have lived in accordance with Government guidelines for COVID.

My PPI experience has increased over the past 3 months as I had more time during lockdown and was very keen to be involved especially in any research which involved learning from our COVID experiences.

This has been done mainly via email contributions and participation in research by phone. I really enjoy face to face meetings generally and also struggled a little at the beginning getting used to video conference technology, mainly anxiety and problems with the internet connection, but once it had all settled down, found that I really enjoyed it. I found the two PIRg meetings to be very well organized and professionally run just like the face to face meetings.

Zoom enabled me to continue to be involved during lockdown and I actually prefer it now especially as it saves me approx 4 hours travelling on 6 buses to attend meetings. It used to be very stressful waiting at bus stops with all the problems of public transport and quite tiring. Now I can participate from home and would like this to continue as it enables me to spend more time on other projects instead of travelling and helps me to manage my mental health conditions much better.

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I think the use of email, phone and Zoom are all excellent ways of including more people in research, particularly those with disabilities, health conditions or caring responsibilities. It gives greater flexibility, eliminating the time involved in travel, the stress of car parking and enables people to manage their environment to suit their health conditions or preferences, e.g. comfortable chair, adjusting devices for the hard of hearing, visual impairment etc.

Kate Gray: I work in patient service assessment, I’ve been a Crohn’s patient for 17 years, and I joined the PIRg last year after starting to work with the School of Health and Social Work at Hertfordshire University.

Because of the medication I take, I have been shielding since April, working from home alongside my husband.

I actually feel like the Patient and Public Involvement (PPI) work has been pretty consistent under the circumstances - I’ve found researchers and facilitators were quick to find solutions and zoom/phone meetings have worked well. I don’t feel like anything has been lost working in this way - I’ve still been able to contribute in the same ways I would have in face to face meetings and interviews.

I think working remotely gives more scope to be flexible - it’s been especially helpful recently when I’ve been having a flare up of symptoms and otherwise might not have been well enough to attend a face to face PIRg meeting.

I think if people can be supported to be confident using new ways of meeting, there’s potential to be even more inclusive - particularly for those who have frequent periods of poor health or mobility.

Marion Cowe: I have been a PIRg member since the beginning and hope to bring the group my past experience as long term caring for people living with dementia, knowledge of voluntary sector and health services.

(Video) Creating better adverts for patient and public involvement opportunities

During the pandemic I have started using my laptop to continue my exercise class and join Church services. I accessed lecturers on my laptop e.g. museums, theatre productions (via You Tube) but it would have been helpful to have Zoom. Unfortunately, I although I could join a Zoom meeting, I could not be heard and people could not see me. It was to do with my microphone and camera settings on my laptop and I was unable to solve the problem. I joined the PIRg meeting and could see and hear everyone on the screen, but was unable to join in. As a solution, we agreed that I would ring the PIRg administrator who facilitated my joining in, and my phone call could be heard. It was not ideal and I could not join in “chit-chat” but it worked ok. Cost is not a problem, but I am aware that other members of the public will be restricted due to phone costs and internet costs. I would suggest groups also use conference calling facilities, we used to use previously on research projects.

A fellow member of the PIRg (technically computer competent) offered to help by phone but we were unable to resolve the issue. It seemed they needed to work on the laptop, however, due to COVID-19, people were unable to come inside the house. A colleague (Elspeth) has now collected the laptop, took it home and her son has now fixed the problem.

It is an important issue that patient and public members do not all have access to the internet and do not have access to the same technical support that academic staff have with their work computers. It demonstrates that social isolation can be lessened by this means and personal interaction in meetings could be continued.

Julia Jones: (Chair PIRg): We are delighted with the feedback about our two recent PIRg meetings by zoom since we went into lockdown and are so pleased that Tony (PIRg member), encouraged us to go online! Attendance at the meetings has been good and it clearly offers more flexibility for some PIRg members who, for different reasons, found attending meetings at the University a challenge at times. Moving forwards, this is a good opportunity to think about reorganising our meetings to offer people the opportunity to join by Zoom in the future.

Sonya Prime: (PIRg Administrator): We are looking at the NIHR guidance to offer an extra £5 to all PPI contributors for remote working costs. At the beginning of July, our payroll team have confirmed this can be paid as an expense separate to other paid hourly rated pieces of work. This is currently only payable during the covid-19 period, the regulations are likely to change again once we get to the end of this tax year (5th April 2021) so will be reviewed regularly in line with University policy and guidance.

By Diane Munday, Wendy Ball, Kate Grey and Marion Cowe (PIRg members), Julia Jones (PIRg Chair), Sonya Prime (PIRg administrator) and Elspeth Mathie (Co-lead Inclusive Involvement Theme, Applied Research Collaboration, East of England).

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FAQs

How do you write patient and public involvement in research? ›

priorities, experience, and preferences? How were patients/public involved in the design of this study? How were they involved in the recruitment to and conduct of the study? Were they asked to assess the burden of the intervention and time required to participate in the research?

Why is patient and public involvement important in research? ›

Research teams which involve patients and the public run better studies because: they are more relevant to participants. they are designed in a way which is acceptable to participants. they have participant information which is understandable to participants.

How do you use PPI in research? ›

Patient and Public Involvement (PPI) is where members of the public are actively involved in research projects and research organisations. These activities recognise that people with lived experiences contribute additional expertise and give valuable, novel insights.

Why is PPI in research important? ›

PPI is important as it enables researchers to design, manage and undertake research projects in collaboration with patients and/or the public, which leads to research that is relevant to the patient groups.

How do you involve public research? ›

Patients and public can be involved in the research process in several different ways: consultation - for instance by asking people to comment on a research proposal. collaboration - for instance by inviting people to sit on a steering group. patient-led research - for instance where patients are co-applicants.

What is public patient? ›

Public Patient means a patient in respect of whom a hospital or health service provides comprehensive care, including all necessary medical, nursing and diagnostic services and, if they are available at the hospital or health service, dental and paramedical services, by means of its own staff or by other agreed ...

What is good patient and public involvement? ›

Patient and Public Involvement (PPI) means actively working in partnership with patients and members of the public to plan, manage, design and carry out research. It is “Research being carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them” - INVOLVE.

Why is public involvement important? ›

The main aim of public participation is to encourage the public to have meaningful input into the decision-making process. Public participation thus provides the opportunity for communication between agencies making decisions and the public.

What are the principles of public involvement? ›

For improving the outcomes of public participation, all actors should actively promote:
  • Access to useful and relevant information for the public. ...
  • High-level involvement and participation in decision making.
  • Creative ways to involve people.
  • Access to justice and equity.
14 May 2016

What does PPI mean in research? ›

Organisations have a statutory duty to involve service users, carers and the public in the commissioning, planning and delivery of all Health and Social Care (HSC). This process is known as Personal and Public Involvement (PPI).

What is patient and public involvement NIHR? ›

Patient and Public involvement in research refers to an active partnership between members of the public and researchers. This means that members of the public work alongside the research team and are actively involved in contributing to the research process as advisers and possibly as co-researchers.

What is the meaning of PPI in medical terms? ›

Proton pump inhibitors (PPIs) are medicines that work by reducing the amount of stomach acid made by glands in the lining of your stomach.

What is public involvement in research? ›

NIHR defines public involvement in research as research being carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them. It is an active partnership between patients, carers and members of the public with researchers that influences and shapes research.

What is a PPI project? ›

Private Participation in Infrastructure (PPI) Database. The Private Participation in Infrastructure (PPI) Project Database has data on over 6,400 infrastructure projects in 139 low- and middle-income countries.

What is patient and public involvement and engagement? ›

Patient and Public Engagement​ is all about ensuring that information and outcomes from research or activities are disseminated to patients and the public, so that they can be informed of our work. It also allows us to gain insights and input from patients and the public.

Who should I involve in my research and why patients carers or the public? ›

Patient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better services, treatments and care.

Who should be the people involved in research? ›

Basically everyone can conduct research who has a particular interest to investigate a certain question in further detail; This can be laymen, carers, teachers, health care professionals, doctors and students, but the biggest stake in health care research have probably academic organisations and pharmaceutical ...

What's the difference between public patient and private patient? ›

In a private hospital you can choose your doctor, you will probably have a shorter wait time for planned surgery and you are more likely to be in your own room. In a public hospital you will have access to more services, especially if you have a complex health condition, in an emergency or if you live in a rural area.

Is public healthcare better than private? ›

Public health insurance is more affordable than its private counterpart, as it has lower administrative costs and often requires no co-pays or deductibles. However, public health insurance is also less flexible, as policyholders are typically given a limited selection of medical service providers.

What is the difference between public and private health care? ›

Difference between public health services and private health services.
...
Private Health CarePublic Health Care
They are well equipped with modern machines and technologiesLack of proper equipment and technologies
Only rich people with good earnings can afford this serviceAvailable at a cheaper cost for everyone
2 more rows

Why is it important to involve service users in decisions about health promotion and healthcare? ›

By involving people in decisions about their health and care we will improve health and wellbeing, improve the quality of care and ensure people make informed use of available healthcare resources. Involving people in their own health and care not only adds value to people's lives, it creates value for the taxpayer.

What is public engagement in public health? ›

The Centers for Disease Control and Prevention (CDC) defines community engagement as: "the process of working collaboratively with groups of people who are affiliated by geographic proximity, special interests, or similar situations with respect to issues affecting their well-being." Health departments can strengthen ...

What does a patient participation group do? ›

The purpose of the group is to facilitate patients and the practice staff working together to share ideas to help improve the services offered at the practice in addition to sourcing out any local community services that would help enhance aspects of the patient's lives.

What is an example of public participation? ›

Public participation is the engagement of individuals with the various structures and institutions of democracy, including voting, contacting a political representative, campaigning and lobbying, and taking part in consultations and demonstrations.

What is the role of public participation and public awareness in society? ›

The principle of public participation holds that those who are affected by a decision have a right to be involved in the decision-making process. Public participation implies that the public's contribution will influence the decision.

How do you engage in public participation? ›

They are to:
  1. Inform the public with objective and balanced information. ...
  2. Consult with the public by informing them and then requesting input.
  3. Involve the public in the decision by accepting input and reflecting this input in the choice.
  4. Collaborate by engaging with the public and sharing the decision-making with them.

What is good public engagement? ›

A good public engagement strategy addresses the same questions that any effective strategy attends to. It clarifies the purpose of the activity – why it matters; clarifies the context; and sets a clear direction of travel. It is important not to 'rush' the writing of a strategy, or to do it behind closed doors.

Why public participation is important in ensuring sustainable provision of services to the community? ›

It also gives individuals in the community the opportunity to understand how a perspective or need which was different from their own had to be catered for and give them a better understanding and acceptance of a final decision or outcome.

What is PPI clinical trial? ›

Patient and public involvement (PPI) in research is research that is carried out 'with' or 'by' patients and/or members of the public rather than 'to', 'about' or 'for' them. At the MRC CTU this includes welcoming patients as members of trial steering groups and asking them for comments on patient information leaflets.

What is private research? ›

The term 'private-sector research work' means an article intended to be published in a scholarly or scientific publication, or any version of such an article, that is not a work of the United States Government (as defined in section 101 of title 17, United States Code), describing or interpreting research funded in ...

Why are they called proton pump inhibitors? ›

They are called 'proton pump inhibitors' because they work by blocking (inhibiting) a chemical system called the hydrogen-potassium adenosine triphosphatase enzyme system (otherwise known as the 'proton pump'). This chemical system is found in the cells in the stomach lining that make stomach acid.

How do you get patient involved? ›

Engaging patients in shared decision-making
  1. Assess patient preferences for shared decision-making.
  2. Educate patients about all possible treatment options and how they fit into a patient's current health status.
  3. Discuss patient values and health-related goals.
  4. Come to a treatment decision with the patient.
1 Mar 2019

What is PPIE NIHR? ›

PPI (Patient and Public Involvement) resources for applicants to NIHR research programmes | NIHR.

How do I participate in clinical trials UK? ›

How do I take part in a clinical trial? You can ask your doctor or a patient organisation if they know of any clinical trials that you may be eligible to join. You can also search for information on a number of websites and register your interest in taking part in research.

How do I get off PPI? ›

Slowly taper off the PPI over 2-4 weeks (the higher the dose, the longer the taper). While the taper is being completed, use the following for bridge therapy to reduce the symptoms of rebound hyperacidity. Encourage regular aerobic exercise. Encourage a relaxation technique such as deep breathing.

What is the best PPI? ›

In the relief of symptom outcome, omeprazole at 40 mg per day (95.2%) from the PPI family ranked first, followed by lansoprazole at 60 mg per day (92.3%), pantoprazole at 80 mg per day (88.1%), and famotidine at 80 mg per day (36.5%) from the H2RA family.

How long does it take for a PPI to work? ›

PPIs take more time to start working compared to H2 blockers. H2 blockers typically work within one hour of being taken. PPIs can take one to four days to start working.

What is involvement in research? ›

Involvement can take the form of consultation of lay people by professionals; collaboration between professionals and service users, or it can take the form of 'user‐led' research. A fundamental principle is that research that involves users transforms them from research subjects into partners or researchers.

How does research help people in different ways? ›

Research is what propels humanity forward. It's fueled by curiosity: we get curious, ask questions, and immerse ourselves in discovering everything there is to know. Learning is thriving. Without curiosity and research, progress would slow to a halt, and our lives as we know them would be completely different.

How do you do secondary research? ›

Secondary research process in 4 steps. Step 1: Develop your research question(s) Step 2: Identify a secondary data set. Step 3: Evaluate a secondary data set.

How research can contribute in better results in the success of any PR campaign? ›

Research Helps You Strategize

Extensive research can help you target the appropriate audiences, find the right influencers and even determine the most cost-effective budget. Having a strategic plan of attack also saves you time making up for errors down the line.

Videos

1. Creating Connections PPIE Training: Public Involvement and Participation in Research
(VOICE)
2. Webinar: Introducing HTW and Patient Involvement
(Health Technology Wales)
3. Public and Patient Involvement and Engagement
(UKMRA-MUK-Concept and Access Research Programme)
4. Patient and Public Involvement and Engagement Celebration event 2020
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5. What role do clinical guidelines play in quality of care?
(European Observatory on Health Systems and Policies)
6. Introduction to Patient and Public Involvement
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