Report of Roundtable on Patient Needs in Beijing
By Xinqing Zhang, ,Suli Sui, Yeyang Su,
1
Introduction
On March 27 2014, the Centre for Bionetworking held a Public Event on
patients’ needs in regard with potential usage of stem cell therapy in the future
at Xiannongtan Residential Community in Beijing.
The interactive public event was organised by the Centre for Bionetworking
and the Xiannongtan Residential Community in collaboration with the Beijing
Institute of Oriental Life Research and Bioon, Bio-Events, China. The Beijing
Institute of Oriental Bioculture was involved in many brainstorming preparation
meetings and helped us to invite scholars, practitioners and patients. They
also contributed to formulating the topics of the event. The Bioon helped us to
disseminate the information, before, during and after the event. They also
helped us to prepare the booklet and invite scholars in the field of stem cell
research.
The aims of the Public Event are two: i) to gain a better understanding of
patients’ needs and expectatio; ii) to examine how patients are perceived to
the emerging biobechnology especially stem cell therapy to meet their needs.
2
Contribution of panelists
This event brought together patients, stem cell researchers, medical
professionals and regulators to talk about patient needs, discussing the
potential usage of stem cell therapy in the future. Interactive panels consist of
four experts from different background. One stem cell researcher from the
Peking Union Medical College, a general practitioner from Chaoyang
Residential Hospital, one public policy researcher from the Institute of Policy
and Management of Chinese Academy of Sciences and a patient
representative from the local community. In addition, we invited a bioethics
researcher and a journal editor who participated in the later session, together
with the patients.
Our research showed that the local community was interested in learning
about stem cell research and the regulatory aspects of advanced biomedical
technologies, before participating into wider discussion on their needs in
relation with stem cell research. It was also requested by the gatekeeper of the
residential community that our event should hold some educational aspect,
which will be integrated into the residential community’s routine medical
education progamm. Thus, we invited scholars and professionals from
different discipline and put together an event which held both educational and
communicational functions. Nonetheless, as the organisers, we considered the
patients were the true experts for this event, whose views were attentively
heard and carefully documented before, during and after the event.
1
Associate Professor Huang Xiaoru from the Institute of Policy and
Management of Chinese Academy of Sciences (CAS) said, “Stem cell therapy
involves collaboration among professionals in four fields, namely, state
management, healthcare professionals, research and patients. But these four
areas are not connected well with each other now.”
Associated Professor Liu Xingxia，a stem cell scientist from the Institute of
Basic Medical Sciences of the Chinese Academy of Medical Sciences (CAMS)
indicated that although the Chinese government has strengthened the
governance of clinical applications of stem cell research.there is a long way to
go from basic research to clinical therapies.
Dr. Zhang Wei, a general practitioner from a local residential hospital,
commented that whilst patients want to access knowledge of new medical
technologies, they also hope to access medical care more easily, with less
costs.
A patient representative, Mrs. Du Huiqun, expressed her hope for new medical
technologies, as well as her concerns about associated risks. Another patient
with both diabetes and cardiovascular disease said that she values the
promise of stem cells to treat diseases that are currently incurable; meanwhile,
she thinks patients need to be better informed about the current state of the
art.
More affordable and accessible healthcare, as well as better patients’
experiences during medical care were also mentioned by the panel members.
They also suggested patients to pay more attention on how to improve their
quality of life, despite their conditions.
3
Knowledge about Patient need and its scientific solution
The ground-braking roundtable on patient needs was open to the public, and it
put ‘patient needs’ at the centre of the discussion on stem cell therapies as one
solution among many. About 60 participants attended this event.
We disseminated the information on the Internet, with the help from Bioon.
During preparation, we worked together with the gatekeeper of the residential
community and with our key informant who resides in the community to
promote our event through group meetings and in-house visits. Locating the
event in a residential community made the process much easier. We did not
distinguish audience from participants in our event. All participants were
recruited from the local community, at a voluntary and interest-oriented basis.
During the interactive discussion, the panel and audience exchanged ideas,
evaluated the similarities and the differences of their experiences, and sparked
new thoughts on how to better address patient needs in new medical
technologies such as stem cell research.
We get a good overview of patient needs. They expressed expectations of the
2
potential of stem cell research and its clinical applications. But in terms of daily
medical care, they expected more from their doctors and changes and
adjustments from relevant healthcare policies and institutions.
In general, the participants were not eager to try out stem cell ‘therapy’ at this
stage, especially after they learned about current status of stem cell research
from the panel members. However, some patients prepared to wait for suitable
treatment. They considered stem cell research hold potential for diseases such
as diabetes, cardiovascular diseases and blindness; meanwhile, they
expected the government to continue making healthcare more accessible and
affordable and to better regulate the health market, expected the hospitals to
make patients’ visits more convenient and conformable, and wished the
doctors give patients more respectful experiences during the consultancy and
treatment processes.
They considered stem cell research may play a role in addressing patients’
needs, but not all of them. A patient mentioned that Traditional Chinese
medicine, which us commonly practiced in China, could act as an alternative
for the dominated treatment based on western medicine. One patient
emphasised that both Chinese medicine and Western medicine are important
for patients, but raised the question of how to use them together. The
discussion suggested better understanding of the combination of treatments
using stem cell therapy and Traditional Chinese medicine.
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Evaluation of the Roundtable
We received positive feedback from the participants. The results of the event
generally matched with our expectations and we learned a lot from our
collaborators, the panel members and the participants. It also help research
team and scholars who participate the public event to obtain experience in
preparation for a second workshop to be held later on in the project.
4.1 What parts succeeded? What parts did not succeed? Why?
We succeeded in creating a platform wherein the stem cell researcher,
physician, social sciences researchers and the patients could share with each
other their views on stem cell research and on patients’ needs, thus facilitated
communication and understandings among different parties. In addition, our
event was widely appreciated by the attendees, especially the arrangement we
made around creating the platform and the atmosphere.
We consider the residential community with which we collaborated provided us
a proper entry into the lives of the local residents and patients. Spending time
with them in advance helped us to build trust and sustainable relations with
some representatives in the local community. The settings itself helped to
create a relaxed atmosphere for the patients to raise their views on their needs
and stem cell research and participate into discussions, which we consider as
a bonus compared with if it were held in a university or institution.
The time span was too limit to fully engage all the patients with the
professionals, nor for the panel members to exchange their views and deepen
their discussions.
3
As most of the participants were the elderly, at the beginning of the event, we
were requested to raise our voice when we were speaking. Approaching the
end of the three-hour’s event, some participants were almost impatient to stay
longer, though most of them expressed their interest to continue the discussion.
It was also unexpected that the participants would discuss with people who sat
next to them during the process, rather than giving their views to the wider
audience.
4.2 Panelists’s feedback
This is new, as in China most academic events have focused on how to
translate stem cell research into clinical applications fast. All of the panel
members appreciated the opportunity to discuss about patients’ needs and to
learn about patients’ perspectives, which is relatively rare for academic events.
Were audience satisfied?
4.3
participants’ feedback
Our survey showed that they were satisfied with the event. Participants
appreciated this opportunity to communicate about stem cell research and
therapy between the experts and residents. “Through this public event, I
understand what stem cell is about now,” a participant said. The feedback
forms, showing 90% very high participant appreciation, ,look forward to more
opportunities for dialogue with scientific experts in the future.
item
excellent
Very good
good
bad
Overal evaluation of the whole
26
8
4
Is the topic clear?
17
15
4
2
Is the tpoic important?
21
11
5
1
Are you interested in the topic?
20
12
5
1
Do you feel useful to you？
24
9
4
1
activities
N=38
4.4
Communication among panelists and participants
Given the short time we had for the event, we considered the communication
among panel members was pretty good. Panel members referred to each
other’s views during their presentations, and exchanged views during panel
discussion. The communication between audience and panel members was
pretty good. As mentioned earlier, we had friendly and intensive discussions,
but due to limited time and personal reasons, some patients did not address
their views in public.
4
Attachment( answered by Yeyang)
What parts succeeded? What parts did not succeed? Why?
We succeeded in creating a platform wherein the stem cell researcher,
physician, social sciences researchers and the patients could share with each
other their views on stem cell research and on patients’ needs, thus facilitated
communication and understandings among different parties. In addition, our
event was widely appreciated by the attendees, especially the arrangement we
made around creating the platform and the atmosphere.
We consider the residential community with which we collaborated provided us
a proper entry into the lives of the local residents and patients. Spending time
with them in advance helped us to build trust and sustainable relations with
some representatives in the local community. The settings itself helped to
create a relaxed atmosphere for the patients to raise their views on their needs
and stem cell research and participate into discussions, which we consider as
a bonus compared with if it were held in a university or institution.
The time span was too limit to fully engage all the patients with the
professionals, nor for the panel members to exchange their views and deepen
their discussions.
Were there unexpected (nice or not so nice) events?
As most of the participants were the elderly, at the beginning of the event, we
were requested to raise our voice when we were speaking. Approaching the
end of the three-hour’s event, some participants were almost impatient to stay
longer, though most of them expressed their interest to continue the discussion.
It was also unexpected that the participants would discuss with people who sat
next to them during the process, rather than giving their views to the wider
audience.
Form of the event
Venue:
Xiannongtan Residential Community, Beijing, P.R. China
Interactive panel:
One stem cell researcher from the Peking Union Medical College, a general
practitioner from Chaoyang Residential Hospital, one public policy researcher
from the Institute of Policy and Management of Chinese Academy of Sciences
and a patient representative from the local community. In addition, we invited a
bioethics researcher and a journal editor who participated in the later session,
together with the patients.
Who was the role of the panel? How was it put together?:
Our research showed that the local community was interested in learning
about stem cell research and the regulatory aspects of advanced biomedical
technologies, before participating into wider discussion on their needs in
relation with stem cell research. It was also requested by the gatekeeper of the
residential community that our event should hold some educational aspect,
5
which will be integrated into the residential community’s routine medical
education progamme. Thus, we invited scholars and professionals from
different discipline and put together an event which held both educational and
communicational functions. Nonetheless, as the organisers, we considered the
patients were the true experts for this event, whose views were attentively
heard and carefully documented before, during and after the event.
Who was the audience? How did they participate?
We did not distinguish audience from participants in our event. All
participants were recruited from the local community, at a voluntary and
interest-oriented basis.
Did the form of the event suit the purpose of the event?
Yes. We received positive feedback from the participants.
Collaborators:
Who were the collaborators?
We had two main collaborators: the Beijing Institute of Oriental Bioculture
and Bioon
What was their input?
The Beijing Institute of Oriental Bioculture was involved in many brainstorming
preparation meetings and helped us to invite scholars, practitioners and
patients. They also contributed to formulating the topics of the event.
The Bioon helped us to disseminate the information, before, during and after
the event. They also helped us to prepare the booklet and invite scholars in the
field of stem cell research.
Were collaborators satisfied with the results? Why?
Yes. We worked well together and all learned from the experiences and
each other. Moreover, the results of the event matched with our general
expectations.
Were you satisfied with the result? Why?
Yes. The results of the event generally matched with our expectations and
we learned a lot from our collaborators, the panel members and the
participants.
Participants
How did you find panel participants?
They were recruited from the residential community.
How did you find the audience?
As the answer to the last question: they were recruited from the residential
community.
How did you promote the event?
We disseminated the information on the Internet, with the help from Bioon.
During preparation, we worked together with the gatekeeper of the residential
community and with our key informant who resides in the community to
promote our event through group meetings and in-house visits.
Was this difficult/ easy?
Locating the event in a residential community made the process much
easier.
Were panel members satisfied?
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Yes. They all appreciated the opportunity to discuss about patients’ needs
and to learn about patients’ perspectives, which is relatively rare for academic
events.
Were audience satisfied?
Yes. Our survey showed that they were satisfied with the event.
Patient needs
Did you get a good overview of patient needs?
Yes.
Did patients think stem cell science can help them in all cases?
They expressed expectations of the potential of stem cell research and its
clinical applications. But in terms of daily medical care, they expected more
from their doctors and changes and adjustments from relevant healthcare
policies and institutions.
Were all patients prepared to wait for suitable treatment?
We did not directly touch upon this question, but our participants were not
eager to try out stem cell ‘therapy’ at this stage, especially after they learned
about current status of stem cell research from the panel members.
Did patients want more investment into research or do they want other
resources to help them?
They expected both. They considered stem cell research hold potential for
diseases such as diabetes, cardiovascular diseases and blindness; meanwhile,
they expected the government to continue making healthcare more accessible
and affordable and to better regulate the health market, expected the hospitals
to make patients’ visits more convenient and conformable, and wished the
doctors give patients more respectful experiences during the consultancy and
treatment processes.
Attitude professionals
Did they regard stem cell science as a solution to all patient needs? Did they
mention the importance of other needs?
No. They considered stem cell research may play a role in addressing
patients’ needs, but not all of them. More affordable and accessible healthcare,
as well as better patients’ experiences during medical care were also
mentioned by the panel members.
Did they advise patients to wait?
Yes.
Did they advice patients to accept their disease?
Yes. They also suggested patients to pay more attention on how to improve
their quality of life, despite their conditions.
Communication
How was the communication between audience and panel members?
Generally good. As mentioned earlier, we had friendly and intensive
discussions, but due to limited time and personal reasons, some patients did
not address their views in public.
How was the communication among panel members?
Given the short time we had for the event, we considered the
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communication among panel members was pretty good. Panel members
referred to each other’s views during their presentations, and exchanged views
during panel discussion.
8