Patient engagement with and use of new health care technologies and innovations is key to driving the adoption and scale of these promising solutions. Join this discussion to hear from patients, care partners, physicians, advocates and others all working to ensure the patient voice is represented in the development and design of digital health tools. You’ll learn about what matters to patients, what their expectations are as both collaborators and patients, and what areas of health care are the ripest for disruption from their perspective!
My group has been working on a project in the mental health field for a few months now but have been lacking the patient and caregiver feedback we need to really make sure that we're making something that will actually help people out. Is there a specific way to reach out to people that's most effective? We obviously want to avoid making patients uncomfortable during the process so establishing first contact is very difficult.
From my experience, patients can advocate well by documenting their situation well. Track your pain level and details around it if you are struggling with pain. Track your blood pressure if that is your problem. Prepare for your visits. Think about what you want to accomplish at the visit and be ready with questions to make the best use of their time. I also think that patients advocate best when we develop a relationship of trust over time. I try not to say something is an emergency unless it really is. Likewise, I try to trust his instincts as well even if I am not sure it will work. I also make sure to speak up if the plan isn’t something I am comfortable with or if I know it isn’t something that I will do so that we can discuss other options.
Sometimes, advocating for yourself isn’t possible, and we need to rely on family and friends to advocate for us.
Sometimes, the healthcare team doesn’t understand why I am asking for things, so I have also learned that a brief explanation of why helps. For example, I don’t like to get blood drawn from an IV site because I think it hurts more and for whatever reason, my blood always clots so they end up waking me up at the hospital early in the morning to stick me again. Nurses think it is weird that I would rather get two sticks, but when i explain it, most of the time they get it.
These are some of my thoughts. What ideas do you have on how patients can advocate for themselves?
As a vendor, I'd love input on how vendors could facilitate communication that benefits patients and caregivers when developing and creating new health care technologies. Communication with vendors and caregivers/facilities/providers often only happens after the purchase is complete, is this the best method? Is there an opportunity for patients to be involved?
It is essential business strategy to partner with patients and caregivers significantly earlier in the ideation and development phase of your innovation or solution. After purchase is too late! There are many ways to partner with patients and invest in their expertise and experiential learnings. Having lived experience and insights will provide a wealth of information and drive UX design that embraces a person's life with a condition. A win-win for all involved!
In the digital world there is truly an app for everything. Patients have a ton of options to shop for apps to help assistant them in a diagnosis from patient tracking/monitoring to exercises to resources/education. What role do these apps play in clinics/hospitals. Are apps a good tool for patients? Do They keep patients engaged in their care journey?
I believe thst a combination of information technology and better use of real world patient evidence can be a tool for good.
Especially in improvjng trials and the FDA drug approval process.
However, I see fsr too many "schemes" that make others rich, pulling money out of healthcare and do not help patients.
And they appear at times to be more concerned with accumulating any and all data on us for uses awsy from improving our health.
Great question, Holly. And Bob, apps are certainly being used to engage patients and families more effectively in clinical trials. Digital tools, widgets and apps hold enormous potential to engage people in managing their own health, communicating clinical information to their care team, reminding and guiding people in complex health tasks from diets to medication regimens, and even harvesting information from one patient to help many others. Here's an example. An actual app allows children to report where their asthma is triggered so when pollen is back on one street, asthmatic kids in the area are alerted to take a different path to and from school. The possibilities are real and the best part is that people (you know them as patients) are designing and co-designing some of the most effective new technologies.
Often times, patients (& carepartners) forget doctors are people too. Doctors often forget what patients are really going through. If you could share one thing to bridge those gaps and strengthen the relationship, what would it be?
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Great question! It helps when we put ourselves in the other person's shoes to gain an understanding. We need to remember that yes, while the doctors are people too, they are presumably living in their "normal" lives doing good work. The patient is completely out of control (again, presumably, not always), and facing likely fears of pain, uncertainty and mortality. So the headspace is different in each role. The doctor is there by choice and the patient is not. Doctors (and all care professionals) have a difficult job of needing to be empathetic to each individual while not getting too involved emotionally, because they need to be steady and strong for the patients. Communication is key here - the needs of both patients and doctors are different and must be acknowledged and respected. Again, this is such an important question and topic to think about.
Having the physician remember thst this is our first journey down a path thst they have trod hundreds of times. Everything is new and overwhelming to us.
Break it down for us into pieces we can understand.
Yes, while the doctor may have seen this emergency or diagnosis thousands of times, we are in shock, petrified, and confused by the lack of empathy and concern. Reassure me. Make me feel supported and safe jn a manner I can understand.
Yes, walking in another's shoes in important. But will say that doctors also have their own lives that could be far from "normal". They may have their own diagnoses, personal struggles, family complexities, etc. Recognizing that doctors went in to the profession as a calling and to help people is the step back that we as patients may need to do from time to time too.
Changes in healthcare policy, the growing number of aging baby boomers, and increasing numbers of chronic illnesses has created a healthcare environment with patients needing more and providers having to do more with less. It is difficult for a patients to understand their physician's burdens because their own health issues are the forefront of their concerns. It is difficult for a physicians to always understand the urgency of their patients' concerns at any given time when they have so many patients to care for. I believe that physicians need a good supportive staff that has the ability to keep the lines of communication open between the doctor and patient. Engaged and empathetic staff can address many patients' concerns while physicians are caring for other patients. This allows for a patient to feel cared for and his/her voice to be heard.
I love the line doctors, nurses etc are there by choice, the patient is not ✨
As a patient, I am much more than the 30 minutes we just spent together. My conditions aren’t 9-5. That my career is just as important to me as theirs are to them. Mutual respect natures the patient - doctor relationship. We are both very overwhelmed but we can do it together ✨
Absolutely. I was referring to "normal" in general terms that this is the doctor's chosen daily routine, whereas the patient is thrown far off their routines into unknown territory, and it's scary.
I’m scared a lot. I don’t get to rely on my health the way many people do. My ability to be active is fragile. Foods, antibiotics, over-the-counter meds, a new prescription – any or all of these have shown they can cut in half my ability to be active or productive. Doctors, insurance companies, and pharmacies all control my access to the prescription drugs I take to keep me from physical disaster. Imagine if you had to get written permission from your town’s mayor to get a drink of water. Well, I need a prescription from some guy or lady like you every few months just to keep me on meds that keep me out of the hospital. The catch – or one of them – is that even though none are controlled substances, because I am a rare disease patient, my combination of meds is also rare. That means my job is to smile for doctors and TO THINK ABOUT THEM. Why? Because I learned long ago that doctors don’t have to be right to be angry. I have to depend on YOU. I live in peril on many fronts all the time.
“That my career is just as important...”. Yes.
While I am a huge advocate of patients advocating for themselves, I also know that it isn’t possible. I was in a serious car accident last fall that involved a helicopter ride to Atlanta. I needed my family to advocate for me when I couldn’t, but I also needed the doctors and nurses to advocate for me as well. There was not a neurosurgeon in the small town where I go to college, so they needed to evaluate my risk and advocate for me to get the care I needed. I think the answer is everyone needs to advocate for the patient. What do you think?
Morgan, I’m so sorry you went through such a traumatic health crisis. Most people will experience a time that they are unable to advocate for themselves. One study suggested that 75% are unable to make some or all decisions at the end of life. But like you, other events can happen anytime.
But your voice can be heard when you prepare someone to serve as your health care proxy and share what is important to you, your values, and what care you hope to avoid.
Advance care planning is not just about end of life. It’s about the times when you can’t speak for yourself. A great resource to help people prepare others to advocate on their behalf is Tge Conversation Project’s “Conversation Starter Toolkit” theconversationproject.org/sta....
Everyone should choose someone to serve as their advocate and prepare them to know what choices you would want. We are our best advocates when that happens!
Amy I couldn't agree with you more and personally feel that everyone coming out of high school should be empowered and prepared with a completed AD. Love the Conversation Project and the many resources they offer. Another excellent resource is Death Over Dinner deathoverdinner.org (kudos to Dr Boissy and last year's PE Summit for the amazing resource!). We can all do more to amplify our individual voices via an AD.
Partner with patients and their carepartners upfront and earlier in your business strategy. Don't design solutions based on executive assumptions and expect patients to conform to your solutions. Innovators must understand the life of the person with the diagnosis, not just deliver a solution for a diagnosis.
Is the effort to use the tool worth the result I'll get? Is the result I get from the tool actionable or relevant to my day to day health? Do I prefer it to the other ways I can get the same information? If any of these are "no" then I'll likely not use the new digital health tool. If any of these seem like they'll be a "no" I may never use it to find out... unless I'm very sick and see this tool as an avenue I must master to be truly doing my best.
Keyword: Actionable! If the innovation doesn't directly empower me as a patient, doesn't give me access to my data or to insights I can use in real-time, what's the point? I don't want to have to call my doctor for the data, it is just adding another hoop I have to jump through.
Our approach is to provide digital health tools that give patients the comprehensive knowledge and deep understanding they need to cope with problems they find most distressing and to solve them if possible. Medical problems with related psychological (emotional, behavioral, cognitive) concerns are best handled via primary care - behavioral health integration through a whole-person therapeutic approach to high value care. I wrote about this at linkedin.com/pulse/behavioral-...
Significant variation reported, depending on type of digital or mhealth tech, disease state or condition, SDoH, etc. Even when adoption may be high or demonstrating increasing trends over time, long-term use or continued use after reaching potential goals or clinical outcomes is a significant challenge. Innovators must invest in partnering with a diverse spectrum of patients during ideation, design, launch, and post-launch of innovations to ensure inclusivity and alignment with what delivers authentic value in both short and long-term. UX design with empathy is a critical component of successful innovation.
The adoption rates are highly variable. I agree with the factors Grace listed, including usability and benefit to an individual patient. Another important parameter is interoperability, as there are so many disparate apps. For patients with comorbidities, a single app addressing their multiple concerns would be more helpful and could increase adoption rates.
By contrast, consumer adoption of digital health tools is on the rise, reaching 87% in 2017, according to the Rock Health’s consumer survey rockhealth.com/reports/healthc.... The survey notes that "winning innovators will create sustained engagement, drive behavior change, or both".
Human-centered care relies on a trusting relationship and partnership between doctor and patient, and often includes a carepartner. Share an example of how your doctor or patient showed an effort to collaborate. How did this effort to collaborate make you feel?
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On a recent business trip to Cleveland, Ohio, my 56 year old Uber driver shared with me that her grand son, a college freshman, was a diabetic patient. Because she was concerned about him being able to responsibly manage his condition while being way from home attending school, she had an app installed on her phone that could track her grand son's blood sugar levels in real time and as a result she could remind him to take his insulin. She also shared that her grandson's girlfriend's mother who lived closer to her grandson's college also had the app downloaded. To me as a physician and healthcare futurist is a dream come true. Having patients and caregivers who are engaged, knowledgeable and are actively managing chronic illnesses outside of the clinic is the future of healthcare we should all strive for.
When I have faced a point jn which a treatment decision has to be made, I am not "ordered" as to what to do. My oncologist will tell me (and my wife - he prefers the caretaker to be there) what the options are, what he prefers and the pluses and minuses of each option. He then wants us to tho home, ake time to make our choice - no on the spot pressure - and tell him whst we would like to do.
What an awesome example!
Having that opportunity to participate in shared decision making is so important! We are definitely seeing a movement towards participatory medicine vs traditional paternalistic medicine.
I recently worked with a patient who presented with a very unique case of a possible cholangiocarcinoma. Her surgeon carefully explained every detail, reviewed all radiology on screen, answered our every question, considered our every reference and suggestion. He recommended 2nd and 3rd opinions, even cancelling a Whipple procedure to pursue another opinion just to be sure. It turned out because of his willingness to be open, truly collaborate with this patient, and consider all opinions, the patient was found to have an autoimmune condition rather than early stage cancer. We are so grateful for the humility to take a step back and explore all angles. Not every doctor is willing to listen and truly hear the patient. This can have significant impacts on patient outcomes and QoL.
I love that when my precious Mom was diagnosed with Leukemia, the oncologist/hematologist showed me how he came to the conclusion by taking me to the hospital lab and showing me the leukemia/leukecytes under the microscope as well as explaining the lab reports.
I love when my GP took the time to draw my spine to show the results of my MRI and what was found.
I loved how my thyroid surgeon took the time to explain that there is a thyroid bed that has to be watched as well when having thyroid cancer. Just taking a moment to help the patient or caregiver understand what is involved can make all the difference in the world.
I was diagnosed with multiple sclerosis (MS) fifteen years ago and have been using an injectable treatment called Copaxone ever since. Over the course of my disease, luckily my symptoms have remained mild and stable. During my last appointment with my neurologist, I asked if I could take a break from the Copaxone. This may sound risky, however, the injections have become increasingly more painful. My neurologist said because of my age and the mild level of disease he would allow me a six month break from the Copaxone. At the end of the six month period he requested I have a cervical and head MRI to evaluate any disease progression. I had the MRI a few weeks ago and everything is stable from the last scans I had in 2014. He told me I can stay off the Copaxone for now and I I will have a follow-up visit with him in a few months. I am grateful that my neurologist found a way to give me this much needed break from the injections while making sure the MS stays in check. I think when patients are allowed to collaborate with providers, patients gain a sense of autonomy regarding their health care and treatment plans.
This is wonderful! 👏👏👏
Cant help but smile as I read these examples Lisa! So seemingly simple yet so powerful. Sounds like you have some wonderful doctors to partner with. It is important for patients and their loved ones to hear about these examples. Some may not know that medicine and care can work this way.
I love this Jackie! It is important to share stories like this. Many patients are afraid to speak up or ask if there is another option for many reasons: afraid of appearing to question their dr, embarrassed to potentially ask a "stupid" question, afraid of being judged by their dr, etc. Voicing values, preferences, and needs and building a trusting partnership leads to successful outcomes and an understanding of expectations. Glad you are stable and able to be monitored carefully.
I brought my practicing electrophysiologist a paper that used a new cellular model to assess the B1 vs B2 selectivity of a variety of beta blockers. I showed him the paper and suggested I switch to a different beta blocker. He agreed. Then, we each independently reviewed information to formulate a guess for an equivalent dose to switch from one to the other. If we were wrong, it would have been bad for my health. If very wrong, it could have been unsafe. We each came up with a proposed equivalent dose for the switch – since it was a new use for an old drug there was no specific info for our intended purpose – and when the dose I proposed fell within the dose range that he proposed, we used it for the switch. It worked well and was hugely important to my recovery. I felt like I had an engaged partner. I felt like we both cared more about my safety and recovery than turf or rank or being mired in the usual way of doing things. And I felt heard – I felt I could live with the decision because I was fully a part of the decision.
That is an incredible story Doug! I could feel the suspense and envision the intense partnership and knowledge exchange. I would imagine that not only is this type of partnership important and literally life changing for the patient but also for the physician. This is why they got into medicine. I often wonder, are empowered, prepared patients that push for partnership in their care a way to bring joy back into medicine, combatting moral injury and burnout?
When my Mom battled metastatic breast cancer for 12 years, we stayed with the same oncologist. It just so happened that he was on-call the day she arrived in the ER and got diagnosed with MBC (her first cancer diagnosis). Once he brought her back from the brink of death, we naturally trusted him. Many Oncology Fellows came and went, nurses changed, but we stayed with Dr. D. He used various treatments over the years, chemo, hormonal medications, several clinical trials, eventually radiation for brain metastasis, and other procedures as needed. It was a true partnership as he was always open to me keeping detailed track of all the tests and medications. Thankfully I found medical errors several times before they could cause harm. He had great empathy and really listened, recognizing at times that she had arrived to a "new reality" as disease progressed. Thank you Dr. D for giving us 12 extra years, as hard as they were!
Grace, I firmly believe that restoring a genuine connection between doctors and patients is one of the first steps to managing burnout. I love your suggestion that empowered patients can restore joy, as opposed to the traditional viewpoint that they annoy and frustrate doctors who are pressed for time.
I think so! It is such a change of pace but it is also that you as the doctor feel like someone else is digging and looking and really trying. When compliance rates for meds is so low overall, I bet it is uplifting to know that you're giving a patient what they want most from a doctor -- someone who is open-minded and listens and uses their skill to try to help. And if the outcome is good too, then you've gotten to be a part of helping someone's hard work change a life.
I see subtle differences in the way doctors regard a patient that is prepared and participates in a proactive conversation about their care. It's almost as if there is a flash of intrigue, a spark of interest, sometimes followed by the question, "How do you know all this?" There is an instant connection at these moments. I have had many of my colleagues in medicine say it is refreshing to have a patient speak about their lived experience, share their insights and their research, ask their prepared questions. There are still physicians who, even with all this legwork and prep, have 1 foot out the door no matter what. But I am fascinated by the moments of intrigue demonstrated by some doctors. I am convinced there is something there that reinvigorates. It isn't a digital tool or innovation that is going to change burnout or moral injury. I firmly believe patients can play a significant role without even knowing it.
What a powerful example! Thank you for sharing your mom's story with us. I'm so very sorry for your loss. Cancer is horrible. There are no words for the incredible oncologist's and care teams that go above and beyond to care for us and our loved ones during such a difficult time. I'm so thankful you can look back and have that partnership to reflect upon. Important to note that importance of being diligent in reviewing one's medical records. Errors, misstatements, and omissions happen frequently and can have profound impacts on patient outcomes and safety.
I have found that providers who try to relate to my life and activities help me get more engaged. For example, instead of focusing on a number from one to ten for a pain scale, they ask me how school is going and whether I am able to ride horses. They ask me how i felt taking medications and ask my opinion on what i need. Then, we discuss the options together. What strategies and tactics have you seen succeed?
Very simply, please be human! Trust is such an important quality that nurtures the relationship between patient, caregiver and healthcare provider. Enable people to trust you as a professional - don't treat patients as numbers. Treat them as individuals - yes they have this condition, but it should never define them. Seek to understand their issues, explore their work/education/hobbies, and engage in discussions about what you can do together to get them to the place they want to be, so that they can do what they want to do. Give people hope, talk to them as an equal, and think of them as a part of your team - working together.
Morgan, what you've mentioned strikes me as very interesting: Having a doctor START with the open-ended questions to help direct the patient towards what may be most important and also to let the patient think through the question. Then ask the 1-10 to be sure the doc and patient both understand what a "6" is. Is it a catastrophe or a manageable situation? The next idea relates to Simon's answer: trust. A doctor can give value to the patient's observations of his or her own health. If you, as a patient, believe that you can observe important things about your own health or illness by being engaged and paying attention -- and you believe those things will be valued by your doctor -- then you feel like part of the team, rather than a bystander in your own care! Doctors can build trust and thereby engagement by showing that they value the patient's observations -- or by asking the patient to look out for this or that leading up to the next appointment.
It seems that, despite all the great innovations available to us now to help make us all more productive, patient/provider encounters are still daunted with unnecessary impediments. Either the clinician is stuck using a clipboard and paper, or they're staring at a screen instead of looking at and engaging the patient eye to eye. This must change - and it surely will. With natural language processing and data-driven algorithms, it's much easier for clinicians to trust an AI that essentially replaces the scribe - at a tiny fraction of the cost, and with greater convenience. The missing piece is the will of administrators to actively pursue these contemporary solutions, and cut through the bureaucratic barriers to testing and deploying these enablers.
Like you stated Morgan, everyone may have a different definition on what they consider quality of life for their daily situation. Both sides should consider and establish what that QOL is to them and find the treatment plan to obtain that goal. Sometimes it's as simple as a cast for a fracture and sometimes it can get more involved with co-morbidity patients. But it all boils down to QOL on a daily basis and how do we get there.
Traditional pain scales are essentially completely unrelatable to the majority of patients who actually experience and live in pain. So many patients prefer the one by blogger Allie Brosh: rasch.org/rmt/rmt264f.htm. While it was meant to be comical, it is incredible how many people can more accurately relate to it. As someone who has been admitted to the burn unit, I can personally attest that this pain scale is more accurate. It is a solid reference point for discussion and injects humor into what may be a dire situation. What is better than a laugh and a moment of humanity shared between a doctor and patient? That being said, treatment planning needs to be focused on what patients value, prefer, and need and align those points with a tailored treatment plan that ensures the best outcomes, is safe, and supports an agreeable QoL.
Bureaucratic barriers, organizational culture, and poor alignment of strategic imperatives with delivery of value-based care are some of the biggest detriments to bringing useful tech to point of care.
Administrators seem so essential... in the eyes of administrators. Cutting admin budgets (and administration folks' jobs) and putting money into improving the clinical encounter -- I favor this, but I can imagine who might not put it atop their list.