The National Prescribing Service (NPS) has made an interesting list of 5 questions patients should ask their doctors. The aim is to be well informed about the benefits and potential harm before you undergo medical tests, treatments, and procedures.
I think the list is useful and I’d encourage people to ask these questions. At the same time I suspect I will not be able to answer all the questions. For example, I don’t know the costs of all available tests, and the exact risks of certain interventions is something I may have to look up.
I have been told NPS is planning to develop resources for doctors so they can better help their patients with these queries. This would indeed be helpful. But in the meantime, feel free to ask! I hope it will lead to less unnecessary interventions.
Here are the 5 questions to ask your doctor before you get any test, treatment, or procedure:
Five doctors went duck hunting one day. Included in the group were a general practitioner, a paediatrician, a psychiatrist, a surgeon and a pathologist.
After a time, a bird came winging overhead. The first to react was the GP who raised his shotgun, but then hesitated. “I’m not quite sure it’s a duck,” he said, “I think that I will have to get a second opinion.” And of course by that time, the bird was long gone.
Another bird appeared in the sky thereafter. This time, the paediatrician drew a bead on it. He too, however, was unsure if it was really a duck in his sights and besides, it might have babies. “I’ll have to do some more investigations,” he muttered, as the creature made good its escape.
Next to spy a bird flying was the sharp-eyed psychiatrist. Shotgun shouldered, he was more certain of his intended prey’s identity. “Now, I know it’s a duck, but does it know it’s a duck?” The fortunate bird disappeared while the fellow wrestled with this dilemma.
Finally, a fourth fowl sped past and this time the surgeon’s weapon pointed skywards. BOOM!!
The surgeon lowered his smoking gun and turned nonchalantly to the pathologist beside him and said: “Go see if that was a duck, will you?”
What’s great about this joke is not just the stereotype behaviour of the five doctors – which most people working in healthcare immediately will recognise. What is wonderful here, is the different disciplines doing some team building. They may not be very efficient as a team yet, and they could have picked a different activity, but at least they have found a common goal: hunting.
In the real world of medicine we sometimes seem to have forgotten our purpose. The inconvenient truth is that we’re often acting as a dysfunctional team where every member’s main goal is to finish their own little task, and where other team members and disciplines are sometimes regarded as ‘the enemy’.
A while back I was privileged to hear Dr Victoria Brazil speak at a conference of the Royal Australian College of General Practitioners in Brisbane. Dr Brazil is an emergency physician and passionate about the topic of medical tribalism. Instead of the more primitive tribal behaviour – characterised by hostility towards other tribes and the unwillingness to take responsibility for a bigger cause – we should move to a kinder tribalism driven by mission and purpose, without common enemies, she argues.
Dr Brazil reminds us that we cannot achieve the best patient outcome without other disciplines. Building relationships, communicating and networking are the key to success. This sounds obvious but it’s not very often that we make time to sit down and have a yarn with members of other teams.
You don’t have to go duck hunting together, but next time you talk to someone belonging to a different tribe, maybe just introduce yourself and ask how they’re going.
If you would like to know more about this fascinating topic: In the video below Dr Brazil, who is also a gifted speaker, addresses a room full of medical tribes (but with a common interest in emergency medicine). She explains how we can overcome the dark side of medical tribalism. Enjoy.
The start of Doctor Amir Hannan’s career was a rocky one. In 2000 he took over the surgery from convicted murderer Doctor Harold Shipman. On their first day, Amir and his colleague found that Shipman’s children had removed all furniture, phones and computers from the practice. Equipment had to be borrowed from other surgeries.
The practice has long since been turned around into a thriving GP clinic with a strong focus on eHealth; for the past 7 years patients have had online access to their electronic health records.
Around the world there are several projects going that allow patients to get access to their records, and Amir Hannan is one of the trail blazers.
He did his medical training at Manchester University and then trained as a General Practitioner in the north-west of England. I got in contact with him after he posted a comment on my blog post about OpenNotes, and he was kind enough to talk to me about his amazing pioneer work.
Amir is passionate about the project: “I am motivated by the desire to do the very best for patients and staff by bringing out the best in all of them. Empowering them, empowers me. When they benefit, I get an immense sense of achievement. It becomes infectious and helps me to overcome any challenges I may face.”
The practice administration and clinical system he uses in his practice is called EMIS, widely used by GPs in the UK. Amir: “EMIS also provides a secure online facility for patients, called ‘Patient Access’, which allows patient access from a range of internet devices.”
What are the benefits?
Amir says the system offers many advantages:
“Benefits include a more open relationship with patients, which enables patients to feel more in control. They can book appointments online, order prescriptions online, update their contact details and access the full records if they wish. This helps patients to read what the doctor or nurse has said, see test results or letters as soon as they arrive back in the practice, check for any errors or missing data and help with completing medical and insurance forms.”
“It improves the relationship between patient and clinician, leading to a partnership of trust.
“Information buttons provide links to trusted information so that patients do not have to do a Google search. You can do all these things via smart phone, tablet or PC.”
“It improves the relationship between patient and clinician, leading to a partnership of trust. Patients use it intelligently saving their time and doctors’ time to make the system safer and more efficient.”
“Patients can send secure messages electronically, write into the surgery on paper and their comments can be added to the record or they can complete an Instant Medical History which we have recently introduced. We do not encourage email as it is not a secure means of communication and our replies could be seen by other family members which may compromise the patient’s right to confidentiality.”
“We need to do further studies to prove patients accessing their records and, most importantly, understanding them, do in fact enjoy better outcomes such as improved blood pressure control, diabetes care or reduced time off work. Anecdotally patients seem to have better compliance of treatment and we have many testimonials from patients describing their positive experiences. Such evidence may become available as more patients sign up.”
What are the risks?
Amir feels his patients are more in control of their health and care and, at least anecdotally, there seem to be some benefits. But are there any downsides?
“We take security and privacy very seriously. The software requires patients to register using their pin numbers for the service and then use passwords to get access to their records. This seems acceptable to the patients. We have not had any data breaches to date. We offer advice for patients to help them understand these issues better.”
“Very few patients ring the surgery because they do not understand something and we have not been sued for anything as a result of giving patients access to their records. In fact we are still waiting for our first complaint and that’s after offering the service for over 7 years. Currently over 2650 patients, 23% of our registered patient population, have access to their records. Records sharing is safe and does not increase litigation.”
“Every encounter afterwards can lead to patients learning more about their symptoms and how they can do more for themselves.
“It does take some time for patients to sign up for online services, and we do have an explicit consent process. Patients are asked to get their pin numbers from the receptionist, look at some of the support material which explains what records access is, and then complete an online questionnaire which confirms their understanding of the issues. Their request then has to be processed which takes about 10 minutes per patient.”
“It is a journey of discovery for patient and clinician so that every encounter afterwards can lead to patients learning more about their symptoms and how they can do more for themselves. Paradoxically, this seems to lead to a reduction in anxiety because patients, carers and family can check what has been said, see that the practice has done what it agreed to do, gain a better understanding of their health and improve their health literacy – patients worry less as a result.”
Amir’s practice offers the service for free to patients, although there is no funding in the UK to support practices to engage with their patients online. Amir: “Our implementation using the practice-based web portal has required the practice to provide its own resources. The current strategy locally has been for the market to drive innovation, which has failed completely. Funding will need to be made available to encourage innovation and enable stretched practices to invest in such tools to gain maximum benefit and to scale this.”
The UK Royal College of General Practitioners has published a guide titled ‘Enabling patients to access electronic medical records. A guide for health professionals‘. Amir recommends this to anyone who is interested in setting up a similar system.
“My hope is that one day all people in the world will be able to do this. This is the future of healthcare and it is happening now! See how others are doing it, such as in the UK: PatientView or in America: Kaiser Permanente and OpenNotes.”
“I use my twitter account to share experiences with others.
“It is not easy and it takes time, resources and effort. Build links with others and collaborate with them to share experience and knowledge. Build a practice-based web portal such as ours, which helps to engage with patients and provides a mechanism of informing, signposting, engaging and empowering patients and their carers. Engage on twitter and social media – there is a great deal of interest. I use my twitter account to share experiences with others.”
“Listen to your patients and staff. Work with them and develop a strategy and a plan. Most importantly get on and do it. Don’t procrastinate or worry about what might happen – instead think about the opportunities and consequences of enabling patients to access their records and understand them.”
Consumer access to electronic health records may not be far off. In the not-so-distant future people will look up their file from home or a mobile device. They will also be able to add comments to their doctor’s notes.
In its current version the Australian PCEHR allows limited access, but the US OpenNotes record system has gone a step further by inviting consumers to read all the doctor’s consultation notes.
Pulse+IT magazine reported that 18 percent of Australian doctors believes consumers should be able access their notes; 65 percent would prefer limited access and 16 percent is opposed to any access at all.
What are the pros and cons? Here are some of the often-mentioned arguments:
Improved participation and responsibility
Increased consumer’s knowledge of their health care plan
Consumers can read their notes before and after a consultation as reminder
Consumers can help health practitioners to improve the quality of the data, eg by adding comments
Consumers can better assist practitioners in making fully informed decisions
Consumers may interpret the data incorrectly creating unnecessary concerns
Increased risk of security breaches and unauthorised access
Unwanted secondary use of the data by eg insurance companies or governmental organisations
Practitioners may need to change the way they write their notes
An article in the New England Journal of Medicine reported that OpenNotes participants felt they had a better recall and understanding of their care plans. They also felt more in control. The majority of consumers taking medications reported better adherence. Interestingly, about half of the participants wanted to add comments to their doctor’s notes too.
Most of the fears of clinicians were, although understandable, ungrounded:
The majority of participants was not concerned or worried after reading what their doctors had written (many just googled medical terms and abbreviations)
Consumers did not contact their doctors more often
A minority of doctors thought OpenNotes took more time, others thought it was time-saving
According to the OpenNotes team transparent communication results in less lawsuits. I couldn’t find any information about the security risks of the system.
Overall, consumers were content: 99% percent preferred OpenNotes to continue after the first year. Doctors were positive too, see this video:
Consumers have the right to know what information is held about them, and they have the right to get access to their health records. Online access therefore seems to be a logical step to exercise these rights. Although the PCEHR allows consumers to see a summary, the consultation notes cannot be viewed. OpenNotes is about sharing all consultation (progress) notes between a consumer and his/her practitioner.
I believe there are 3 trends happening that will push this development:
The culture of sharing data online
The increasing consumer participation in health care
Evolving digital and mobile technologies
The 3 main reasons why it will not happen overnight:
An attitude change towards full access takes time
Security and privacy concerns
Lack of incentives for software developers and practitioners
Online access to electronic records (viewing and commenting) will boost transparency. It will change the interaction between consumers and practitioners and may even improve quality of care. I’d love to see more trials and experiments in this area. What do you think?
Social media is here to stay. A lot of registrars and young doctors have one or more social media accounts, and I have yet to meet a medical student who is not on Facebook. Patients are already sharing online (health) information via Facebook, Twitter and other social media accounts – so sooner or later health professionals will need to decide whether or not to participate.
Social media is increasingly used for medical education, and sharing knowledge and information such as tips, resources, literature and links. It’s also useful to build an online community. Clinics can share health information and other practical information.
Social media is more interactive than a website and you can reach a wider audience in real-time. Another benefit is the value of health promotion and lifting the profile of a medical practice or organisation. I’d like to mention the use of blogs, pictures and videos. I find they are a great way to communicate a message, and I use my social media accounts to let my followers know when I’ve posted something new.
Make the most of social media
Organisations need to be prepared to put aside time to manage their online presence, and there is no easy way out here. It takes time to post useful material and interact with others. Social media is a two-way street and not just another promotional channel. If you use social media for branding or promotional purposes only, you may lose followers.
Your online presence should have a consistent approach. Too many organisations set up a Facebook account without first developing a clearly defined strategy. It is recommended to take some time to plan and figure out the purpose of the social media campaign, which medium to focus on, and how to keep it sustainable and current. This usually requires a motivated person within the organisation.
Preparation is key, and implementing a social media policy should be part of the preparation. Some things to include in the policy are, for example, how to respond to negative feedback and/or complaints received via social media; and how to comply with AHPRA regulations.
The AMA has a useful document that outlines the risks. I also felt that the social media workshops organised by MDA National are an excellent way to become familiar with the common pitfalls.
Is social media for you?
Due to the time commitment, and the effort it takes to set up and maintain social media accounts, it may not be ideal for everyone.
For those who want to contribute to online health promotion or interact and share health information with their patients or other health professionals, social media is not without risks, but it can be an effective tool if used wisely.
This article appeared in MDA’s Defence Update in April 2014. Original title: ‘Social media in modern medicine’.
And so the AHPRA Action came to an end this week. The Medical Board announced on Wednesday it would work with the other Boards to change the advertising guidelines.
The media statement: “(…) practitioners are not responsible for removing (or trying to have removed) unsolicited testimonials published on a website or in social media over which they do NOT have control.”
Hats of to the Medical Board and AHPRA for listening to the feedback. I have learned three things:
#1: We now all know the rules
The media attention and focus on the law and advertising guidelines has made the road rules clearer than ever. Testimonials mentioning clinical care & used in advertising are out, and unsolicited comments including thank-you’s are in. Of course we will have to wait for the final revision, but it seems we all know where we stand.
#2: Consumers and health care professions united
The controversial advertising guidelines united not only health professions, but also consumers and professionals. This should happen more often. Some have already raised ideas to bring the health care social media community together on a more structural basis – watch this space.
#3: Big government should involve stakeholders
Consumer health advocate Anne Cahill Lambert noticed that AHPRA had not received consumer submissions during the guidelines revision. In this Crickey Blog she wrote: “Genuine consumer participation is sometimes difficult. But it should not be dismissed out of hand because of its difficulty.”
AHPRA has already started engaging and listening via Twitter. Here’s hoping that AHPRA will genuinely engage all stakeholders during future guidelines and policy revisions – without further increases in registration fees of course.
I can confirm that the Government is not going to build a massive data repository. We don’t believe it would deliver any additional benefits to clinicians or patients – and it creates unnecessary risks (~Nicola Roxon)
I’ve studied the PCEHR but I’m still not sure what the government has built and for what purposes. I was always under the impression that the PCEHR was designed to assist clinicians to improve patient care through better data flow. But this may not be the case.
The recent resignation of NEHTA’s top National Clinical Leads is an ominous sign. If the Department of Health does not start sharing ownership of the PCEHR soon and improve governance of the system, the PCEHR will fail. Here’s a quick rundown of the issues and how to move forward.
A first glance at the PCEHR Act 2012 seems to confirm that the PCEHR is built with clinicians in mind, as its four purposes are clinical in nature:
To help overcome fragmentation of health information
To improve the availability and quality of health information
To reduce the occurrence of adverse medical events and the duplication of treatment
To improve the coordination and quality of healthcare provided to consumers by different healthcare providers
So far so good. But the Act is 93 pages long and I could find at least five other ‘non-official’ purposes of the PCEHR spread out throughout the Act:
Law enforcement purposes
Health provider indemnity insurance cover purposes
Public health purposes
Other purposes authorised by law
And this is where the concerns begin. These ‘non-official’ purposes are not directly related to the care doctors provide to their patients. In general, one would say that patients and clinicians have to give informed consent before their health information can be used for research or other purposes. It seems informed consent is missing here.
Combine this with certain clauses in the one-sided PCEHR participation agreement and you’ll forgive me for thinking that the government, contrary to Roxon’s reassuring words, has built a massive data repository: Once clinicians sign the agreement, they grant the Department of Health and Ageing a perpetual, irrevocable, royalty-free and license-fee free, worldwide, non-exclusive license (including a right to sub-license) to use all material they have uploaded to the PCEHR.
Those who think that you can always opt out are mistaken. Even if health care organisations or practices cancel the participation agreement, seven of the fourteen clauses survive termination, including clauses regarding liability. It is good to know that the government will continue to use the information after cancellation by a clinician or consumer for up to 130 years.
Another concern is the fact that the Minister may make or change PCEHR rules without legislation, and the Department of Health can change the participation agreement at any time without the need for input from clinicians. We thought the After-Hours and PIP contracts by Medicare Locals were a disaster, but this agreement is possibly worse.
By now it is obvious that Clinical Leads and professional organisations have not been involved in many important decisions. There is a range of other issues, which I won’t discuss here in detail, including technical software glitches and the absence of MBS item numbers. Under the PCEHR Act 2012, all clinicians are appear to be seen as employees, which could be a problem as many doctors may be employed as contractors for various reasons.
If the PCEHR can be used for data mining, legal purposes, insurance purposes etc, then that is fine, but, I would strongly advise the profession to stay clear from it. If however we agree, that the PCEHR is a clinical tool, then clinicians must be involved.
What we need first of all is an open, well-informed discussion about the purposes of the PCEHR. What are consumers and clinicians exactly saying yes to when they sign up? A proper, transparent, independent governance structure with specific executive authority should be formed. This PCEHR Board should include members from professional and consumer organisations and act as a watchdog over the PCEHR. Any changes to the rules require a consultative process with professional bodies including AMA and RACGP before the Board can sign off. The current PCEHR Advisory Committee and Council are not fulfilling these criteria at the moment.
Consumers should know exactly what happens with their data after they have visited a health care professional and who has access to their information. The purposes of the PCEHR must be clear and agreed upon by all stakeholders. Clinicians own the rights of the data they create and upload, there is no need to grant the government a perpetual irrevocable license to use this data.
The PCEHR Act 2012 and the participation contract must both be reviewed and made 100% acceptable to clinicians and 100% opt-out must be possible for clinicians and consumers at all times.
This will take time, but if we don’t start now there is no hope for the PCEHR.
This article has been published in Medicus, the journal of the AMA(WA)
It is not easy to find balanced information about the PCEHR. For that reason I welcome the information prepared by the Australian Privacy Foundation. The APF has been an advocate for privacy protections, representing the public interest to governments, corporations and industry associations.
The APF has always strongly supported eHealth, but in a press release Dr Juanito Fernando said: “Neither clinicians nor the rest of the community understand the system, let alone the full implementation details.”
The APF has prepared two FAQs: one for health consumers (great for waiting areas) and one for clinicians. The government’s FAQs about the PCEHR can be found here.
Let’s hope the new information will improve awareness about the PCEHR and stimulate discussion about the many grey areas.
Dr Edwin Kruys has provided feedback on a draft version of the FAQs for clinicians by the Australian Privacy Foundation
‘Reputation management’ was the topic of an article in the careers-section of this month’s Medical Journal of Australia. As I have blogged about reputation management before I was asked a few questions about the way my practice has used Facebook.
I think Facebook and other social media have the potential to improve communication with our patients and colleagues and make healthcare more transparent – if used wisely of course.
Unfortunately the Australian Health Practitioner Regulation Agency (AHPRA) has scared the healthcare community with their social media guidelines. Doctors are now being told by medical defence organisations to be even more careful with social media, but I’m not sure I agree with the advice given.
Do’s & don’ts
Here are the do’s and don’ts as mentioned in the MJA article:
“Do allow likes and direct messaging on the practice Facebook page, but don’t allow comments. This will avoid any dangers associated with comments classed as testimonials by AHPRA. It also avoids problems such as bullying that may occur when comments are made about other comments.”
“Don’t respond to negative remarks online, as it risks falling into the category of unprofessional conduct if brought before the medical board.”
“Don’t befriend patients on Facebook if you are a metropolitan practice, Avant’s Sophie Pennington advises, so as to keep some professional distance. She says that in regional and rural areas it can be unrealistic to have this separation.”
“Do link your Facebook page to your website, LinkedIn and any other profiles you have set up online. This will help to ensure that these options appear higher on the search-page listings when others look for your name.”
“Don’t google yourself!”
Negative vs positive feedback
I think negative comments online are a great opportunity to discuss hot topics (such as bulk billing and doctors shortages) and to engage with the community in a meaningful way. Positive feedback by patients is wonderful and should not be discouraged, as long as it’s not used as a way to advertise health services.
Health practitioners should be supported to communicate safely online. But not allowing Facebook comments is defeating the purpose of social media.
The previous Christmas parties at work were always nice. We sat down and were served a nice dinner. There was nice live music. We were fed and entertained – what more can you ask for?
Last year our management team took a different approach. We were not fed. We had to prepare our own food: Select the toppings for our pizza and bake it in the wood fired pizza oven. We waited patiently in line. We were the chefs.
There was no band. We had to sing ourselves – on stage. We were the entertainment. There were sumo suits; there was a gladiator ring. It was the best Christmas party ever.
Participation is fun. It creates a sense of ownership, responsibility and improves team spirit. That’s why social media works. Social media empowers. We have become participants instead of spectators.
This is how it should be in health care. I love it how some of my patients take ownership of their health. They are actively engaged, do research, ask questions and understand their treatment. As a doctor I’m not telling them what to do, I’m just part of their team.
Participation is the secret sauce. As health care professionals we must do everything we can to encourage participation.