Shobha Shukla and Bobby Ramakant, CNS
Who decides the questions health scientists research upon to find reliable answers? Do the patients decide or other consumers, or the doctors, or the policy makers, or other stakeholders make a call? How important is the consumer voice in decision-making on the research tables? "There is one famous example, when doctors and patients
of rheumatoid arthritis came together. Doctors had assumed pain to be
a major research outcome that patients were interested in. When they engaged the
patients in their discussions doctors were very surprised because what
was most important to the patients is that they felt tired all the time.
It had not occurred to doctors that feeling tired is something they
should be studying. It is very important that people interact and we
learn a lot about what we have not been measuring because of the
assumptions" said Dr Kay Dickersin, Director, Center for Clinical Trials, John Hopkins
Bloomberg School of Public Health and Director of the US
Cochrane Center.
The US Cochrane Center also hosts Consumers United for Evidence-based Healthcare (CUE) in which Dr Kay Dickersin plays a key role. CUE is a national coalition of health and consumer advocacy organizations committed to empowering consumers to make the best use of evidence-based healthcare. Dr Dickersin spoke with Citizen News Service (CNS) at the 22nd Cochrane Colloquium in Hyderabad, India.
"Even in eyes and vision check, we measure how well someone can see the chart but may be that person is interested in 'can I drive?' 'Can I see my friend across the street to wave?' And not how she measures on that vision chart. So we may be thinking of the same things or measuring them in different ways" said Dr Dickersin who also serves as an Editor of the Cochrane Eyes and Vision Review Group.
She gave another example to underline why should researchers engage with consumers at all levels: "For scientists who are doing HIV research it is important to know what outcomes are people living with HIV (PLHIV) interested in? - Interested in death, causes of death, or also interested in living? What aspects of living are very important to PLHIV? Sometimes when we ask patients and consumers we get answers we are surprised about."
Patient engagement - a hot button issue
"We are interested in educating both the consumers and the healthcare professionals about how can they engage with one another. Because I do not think most people know what patient engagement means, it is a hot button issue. People say they really want to engage with patients but how do we do that? Should we have an advisory board so that healthcare professionals do not have to talk to patients very often? Or do we bring them in once a week to actually talk with you or ask them to call you when they have a question? I do not claim to know the answer but I do think we have to try to figure that out together."
"The reason why we engage with patients' or consumers' groups is because if there is a learning going on then it should be two-directional. The patient representative should sit on my panel and tell me what are the important research outcomes."
Medical 'world' is more often than not very 'top down'. CNS asked Dr Dickersin what motivated her to embark upon a mission to change the common fashion of practice of medicine, so that consumers' voice starts to get more heard and two-directional meaningful engagement with healthcare providers also begins to deepen roots.
This is what Dr Dickersin shared: "I started about 25 years ago when I was myself a patient, but most work on engaging consumers did not formally start till very recently. When I was a patient I wanted someone to ask patients like me what do we want, what are we thinking, or what was important to us? In my case I had breast cancer, I thought people should ask me how was I coping. I had little children, and was in my 30s. I thought that may be other patients can be benefited by my sharing of what were the mechanisms I used to cope. One of the best things that happened to me was when my doctor said I want you to meet another patient who is your age and going through similar things. That was wonderful. I had breast cancer, I wanted to know if I can still wear a pretty sweater or I have to wear baggy clothes from now on? And she came to meet me over lunch and she was wearing a beautiful sweater. That kind of thing made such a difference. I was of course worried about dying, concerned about my children but I was also worried about pretty sweater. So meeting another patient gave me answers which were different to what people were talking to me about."
Dr Dickersin survived the breast cancer and wrote the coming years of her life with ink of courage. She helped put together the first breast cancer support group in her city and also became a strong champion amongst researchers passionate about evidence-based healthcare to engage consumers meaningfully.
She shared: "I had helped put together a breast cancer support group in my city as there was none. People used to share a lot about chemotherapy, throwing up, hair falling out, or other issues. Often family cannot put up with this for longer than few weeks, as they get sick of hearing that I threw up 5 times today or my hair fell out. It has been very sad for them but they need to move on. But we are not 'moving on'... When patients connect they understand what important issues were."
"We went to the National Cancer Institute and we talked about what outcomes were important. In those days they were doing mastectomy but it was not radical mastectomy, and not that bad. Lot of women had lymph oedema, swelling of their arms because their lymph nodes have been taken out, but doctors were saying that is not a problem anymore. Patients were telling the doctors that they need to study this as this is a problem for them. Now swelling in hands is considerably less but if someone has swollen hands then she has swollen hands, and it does not matter for that person what it used to be earlier!"
"Women with breast cancer had questions such as the effect of chemotherapy on menstruation, will they be able to have children later on, but doctors did not think it important to study the effect of chemotherapy on menstruation then. It was not considered as important as some of the other side effects such as laboratory tests, blood values, what happens to your white blood cells, but these women were really concerned about losing their fertility, getting to menopause earlier, getting older. It is a different perspective and it is good to talk to other patients and consumers who share your worries."
Doctors and patient engagement: Possible?
All has not been smooth in Dr Dickersin's work to help engage patients and doctors together in health research. Dr Dickersin reflected that "Medical doctors do not really know what it means to engage with patients. There are different kinds of patients: some people want to learn more about the disease, some feel like they are friends with the doctors, some patients want to change their doctors - everybody has a different goal, but our goal is to do research together. Some doctors say that they work with patients but they do not really – they are worried that 'it will take too much time.' 'Patients will try to tell them what to do.' So each side has its own worries, concerns and finding a way for people to work together is a bit of a challenge."
Do people, policy makers, doctors, use evidence-based medicine?
It may be surprising but it is true that often evidence does not drive our policies and practices. Promoting evidence-informed public health at all levels is a growing challenge. Dr Peter Gotzsche, Director, Nordic Cochrane Centre and Professor in University of Copenhagen, had told CNS at the 22nd Cochrane Colloquium: "We have done research on using mammography screening for breast
cancer for over 15 years and have documented that mammography screening
does more harm than good. I am only waiting for the first country to
stop mammography screening in wake of the existing strong evidence. We
found that mammography screening leads to 50% over
diagnosis. All these additional 50% women diagnosed with breast
cancer are just harmed by getting a cancer
diagnosis. Many times we have found that breast disease disappears by
itself and it would not have bothered many of these additional women who
got
detected by mammography screening. Radiotherapy is very good if you
have a real dangerous breast cancer not detected
by screening. But when we use radiotherapy on healthy
women we kill some of them through increasing their likelihood of
developing lung cancer, heart disease and other
cancers. Radiotherapy is lethal when we use it on healthy women."
Dr Dickersin commented when asked about how easy it has been for her to convince policy makers, doctors, and consumers about taking this evidence about mammography into account: "It has been very difficult to convince governments, doctors, and consumers to use evidence against mammography. I do not know why. May be it is because of so many years we have invested in mobilizing women to go for mammography screening. People do not understand why mammography screening test can be bad, just like the PSA test is [not beneficial] for prostate cancer screening in men. It is a very similar situation, probably causes more harm than benefits in most cases."
"I think there is a difference in how we treat men and women. Sometimes people argue that 'if we tell women that mammogram below age 50 or before menopause may do more harm than good' women may be 'confused'. We have never used the word 'confused' for men [when telling them that PSA test is not beneficial for prostate cancer screening]."
Asking people what is important to them
Dr Dickersin shared that "In US we do a workshop for consumers on how to ask a question with a researcher. In US atleast we have a system where people can contribute questions for systematic reviews. Many of these questions were not the questions you can do a systematic review on, so it was important to know how to frame your question so that systematic reviews can be done. This year we are doing something different so that what people say can be part of the systematic review, we are asking them what is important to you as an outcome of research?"
"Consumers need to know where the problems are in evidence-based medicine. For example, publication bias – not everything can get published but consumers can make that change happen so that information is publicly available. Consumer voice needs to be part of decision making."
Shobha Shukla and Bobby Ramakant
Citizen News Service - CNS
8 October 2014
 |
| Dr Kay Dickersin, Director US Cochrane Center |
The US Cochrane Center also hosts Consumers United for Evidence-based Healthcare (CUE) in which Dr Kay Dickersin plays a key role. CUE is a national coalition of health and consumer advocacy organizations committed to empowering consumers to make the best use of evidence-based healthcare. Dr Dickersin spoke with Citizen News Service (CNS) at the 22nd Cochrane Colloquium in Hyderabad, India.
"Even in eyes and vision check, we measure how well someone can see the chart but may be that person is interested in 'can I drive?' 'Can I see my friend across the street to wave?' And not how she measures on that vision chart. So we may be thinking of the same things or measuring them in different ways" said Dr Dickersin who also serves as an Editor of the Cochrane Eyes and Vision Review Group.
She gave another example to underline why should researchers engage with consumers at all levels: "For scientists who are doing HIV research it is important to know what outcomes are people living with HIV (PLHIV) interested in? - Interested in death, causes of death, or also interested in living? What aspects of living are very important to PLHIV? Sometimes when we ask patients and consumers we get answers we are surprised about."
Patient engagement - a hot button issue
"We are interested in educating both the consumers and the healthcare professionals about how can they engage with one another. Because I do not think most people know what patient engagement means, it is a hot button issue. People say they really want to engage with patients but how do we do that? Should we have an advisory board so that healthcare professionals do not have to talk to patients very often? Or do we bring them in once a week to actually talk with you or ask them to call you when they have a question? I do not claim to know the answer but I do think we have to try to figure that out together."
"The reason why we engage with patients' or consumers' groups is because if there is a learning going on then it should be two-directional. The patient representative should sit on my panel and tell me what are the important research outcomes."
Medical 'world' is more often than not very 'top down'. CNS asked Dr Dickersin what motivated her to embark upon a mission to change the common fashion of practice of medicine, so that consumers' voice starts to get more heard and two-directional meaningful engagement with healthcare providers also begins to deepen roots.
This is what Dr Dickersin shared: "I started about 25 years ago when I was myself a patient, but most work on engaging consumers did not formally start till very recently. When I was a patient I wanted someone to ask patients like me what do we want, what are we thinking, or what was important to us? In my case I had breast cancer, I thought people should ask me how was I coping. I had little children, and was in my 30s. I thought that may be other patients can be benefited by my sharing of what were the mechanisms I used to cope. One of the best things that happened to me was when my doctor said I want you to meet another patient who is your age and going through similar things. That was wonderful. I had breast cancer, I wanted to know if I can still wear a pretty sweater or I have to wear baggy clothes from now on? And she came to meet me over lunch and she was wearing a beautiful sweater. That kind of thing made such a difference. I was of course worried about dying, concerned about my children but I was also worried about pretty sweater. So meeting another patient gave me answers which were different to what people were talking to me about."
Dr Dickersin survived the breast cancer and wrote the coming years of her life with ink of courage. She helped put together the first breast cancer support group in her city and also became a strong champion amongst researchers passionate about evidence-based healthcare to engage consumers meaningfully.
She shared: "I had helped put together a breast cancer support group in my city as there was none. People used to share a lot about chemotherapy, throwing up, hair falling out, or other issues. Often family cannot put up with this for longer than few weeks, as they get sick of hearing that I threw up 5 times today or my hair fell out. It has been very sad for them but they need to move on. But we are not 'moving on'... When patients connect they understand what important issues were."
"We went to the National Cancer Institute and we talked about what outcomes were important. In those days they were doing mastectomy but it was not radical mastectomy, and not that bad. Lot of women had lymph oedema, swelling of their arms because their lymph nodes have been taken out, but doctors were saying that is not a problem anymore. Patients were telling the doctors that they need to study this as this is a problem for them. Now swelling in hands is considerably less but if someone has swollen hands then she has swollen hands, and it does not matter for that person what it used to be earlier!"
"Women with breast cancer had questions such as the effect of chemotherapy on menstruation, will they be able to have children later on, but doctors did not think it important to study the effect of chemotherapy on menstruation then. It was not considered as important as some of the other side effects such as laboratory tests, blood values, what happens to your white blood cells, but these women were really concerned about losing their fertility, getting to menopause earlier, getting older. It is a different perspective and it is good to talk to other patients and consumers who share your worries."
Doctors and patient engagement: Possible?
All has not been smooth in Dr Dickersin's work to help engage patients and doctors together in health research. Dr Dickersin reflected that "Medical doctors do not really know what it means to engage with patients. There are different kinds of patients: some people want to learn more about the disease, some feel like they are friends with the doctors, some patients want to change their doctors - everybody has a different goal, but our goal is to do research together. Some doctors say that they work with patients but they do not really – they are worried that 'it will take too much time.' 'Patients will try to tell them what to do.' So each side has its own worries, concerns and finding a way for people to work together is a bit of a challenge."
Do people, policy makers, doctors, use evidence-based medicine?
It may be surprising but it is true that often evidence does not drive our policies and practices. Promoting evidence-informed public health at all levels is a growing challenge. Dr Peter Gotzsche, Director, Nordic Cochrane Centre and Professor in University of Copenhagen, had told CNS at the 22nd Cochrane Colloquium: "We have done research on using mammography screening for breast
cancer for over 15 years and have documented that mammography screening
does more harm than good. I am only waiting for the first country to
stop mammography screening in wake of the existing strong evidence. We
found that mammography screening leads to 50% over
diagnosis. All these additional 50% women diagnosed with breast
cancer are just harmed by getting a cancer
diagnosis. Many times we have found that breast disease disappears by
itself and it would not have bothered many of these additional women who
got
detected by mammography screening. Radiotherapy is very good if you
have a real dangerous breast cancer not detected
by screening. But when we use radiotherapy on healthy
women we kill some of them through increasing their likelihood of
developing lung cancer, heart disease and other
cancers. Radiotherapy is lethal when we use it on healthy women."Dr Dickersin commented when asked about how easy it has been for her to convince policy makers, doctors, and consumers about taking this evidence about mammography into account: "It has been very difficult to convince governments, doctors, and consumers to use evidence against mammography. I do not know why. May be it is because of so many years we have invested in mobilizing women to go for mammography screening. People do not understand why mammography screening test can be bad, just like the PSA test is [not beneficial] for prostate cancer screening in men. It is a very similar situation, probably causes more harm than benefits in most cases."
"I think there is a difference in how we treat men and women. Sometimes people argue that 'if we tell women that mammogram below age 50 or before menopause may do more harm than good' women may be 'confused'. We have never used the word 'confused' for men [when telling them that PSA test is not beneficial for prostate cancer screening]."
Asking people what is important to them
Dr Dickersin shared that "In US we do a workshop for consumers on how to ask a question with a researcher. In US atleast we have a system where people can contribute questions for systematic reviews. Many of these questions were not the questions you can do a systematic review on, so it was important to know how to frame your question so that systematic reviews can be done. This year we are doing something different so that what people say can be part of the systematic review, we are asking them what is important to you as an outcome of research?"
"Consumers need to know where the problems are in evidence-based medicine. For example, publication bias – not everything can get published but consumers can make that change happen so that information is publicly available. Consumer voice needs to be part of decision making."
Shobha Shukla and Bobby Ramakant
Citizen News Service - CNS
8 October 2014
