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!
There are many examples of ways in which research opportunities can be brought closer to patients and caregivers. These include research participation in studies, and research engagement/involvement activities working with researchers/healthcare professionals in designing research. Does anyone ever have conversations about research within a clinical setting? It would be great to hear from individual experiences, and how you think we can improve opportunities for patients and caregivers when it comes to research.
Navigating the health care system is extremely complicated. Being a patient or a supporting carepartner can feel downright impossible at times. If you could wave a magic wand, what's the biggest friction point you'd magically love to solve right now?
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If I could wave a magic wand, I would solve the insurance/financial situation for people. The insurance maze creates tremendous confusion when it comes to covering medical necessities. In our patient experience research, financial toxicity ranks as one of the highest stressors. If we could simplify the process, clarify the criteria for coverage and reduce the burden of paperwork that comes with it, we could solve so many problems for patients and caregivers. Then they could focus more on their health and well-being to improve quality of life.
I have been fortunate during my ten yrar cancer journey to not have any major issues that overburdened me (besides the treatment for the myeloma).
One of the bigger ones I see with other patients is the inability to absorb the information coming at them (still in shock and/or it is too technical or they cannot comprehend it).
Patients should do their own homework but the physician must in many cases bring patients and caregivers up to speed so they can understand and be avtive in their care process , all to improve resukts.
I would create a universal electronic health record (EHR) system. If a patient's health records were stored in universal system, it would make is easier for patients who see numerous doctors and have multiple diagnostic testing. A universal EHR would also help physicians because they would have immediate access to all of the health records of the patients they care for.
Marcia, great example! The administrative burden associated with insurance is overwhelming and disastrous. Physicians are inundated with paperwork for approvals, pre-certs, appeals, denials. Patients don't know where to start and it's an unorganized, uncoordinated, frustrating process to be up against.
I would love to see technology bridge these learning and health literacy gaps. Our US Dept of education needs to be held accountable for not being more proactive in teaching healthcare experience literacy incrementally from K-12. There's only so much time that physicians and their care teams have to spend. I imagine that this can. contribute to burnout, trying to bridge these massive gaps in health literacy.
Patients need real-time access to their health information to be proactive, informed in their care as well as to coordinate it as seamlessly as possible.
On a personal level, my biggest headache is managing health insurance. It always gets billed wrong and I have to spend an unreasonable amount of time trying to rectify. If I could wave a magic wand it would be that insurance companies took out what I owed them so I didn't have to worry about it -- but we would need a MUCH better system for me to be convinced what they said I owed is really what I owed!
Grace, you posed a terrific question. And Marcia and Bob pointed to two of the very common challenges patients and families experience. I understand as a person living with stage 4 cancer for more than 8 years and as someone engaged in health care innovation and redesign to make health care delivery "Age-Friendly", address the needs of the seriously ill and those at end-of-life, and support family caregivers through my work at The John A. Hartford Foundation (www.johnahartford.org). Here's my Top Ten list!
Top 10 Challenges for Patients:
10. Communication in "Medical-ese" (should be in "Human-ese")
9. Clinicians who talk more than they listen
8. Information that does not flow to other clinicians
7. Care that is reactive not proactive
6. Unable to compare and anticipate costs and value
5. Clinicians who don't know "what matters" to their patients
4. Information that isn't provided in writing ("Human-ese'' please)
3. Failure to address needs at home (community-based services)
2. Measures and payment that incentivize unwanted care
1. Clinicians who focus on body parts or diseases (when its a multi-morbid world
Remember the words of Osler, "The good physician treats the disease. The great physician treats the person who has the disease."
Patients with a chronic illness, rare disease, cancer, multiple co-morbidities need to be extra diligent about insurance and billing due to the number of interactions they have with healthcare. Errors run rampant, both from a hospital billing side and the insurance side. Needing to call multiple entities and numbers, staying on hold, explaining repeatedly what the problem is is not easy and so consuming. Definitely a great place to wave a magic wand Jen!
Thank you for your thoughtful answer Amy! Now all we need is that magic wand!
I would love for the magic wand to handle the back and forth phone calls patients/caregivers have to make between insurance, doctor office, pharmacy/pharmacists. This is a manic circle that can put a patient into days of relapse. The middlemen have created a mess between the doctor-patient relationship. Forget about it if one of those is having a bad day. They have the ability to make it worse and/or not make it happen at all. Thereby allowing patients to suffer for days or long weekends at a time.
What are the pros and cons of the sources you access? What sources influence you most/least? How can these tools be enhanced to better address patient/caregiver concerns?
There's so much information out there - it can be pretty difficult to navigate through what you can trust, and what you can't. I look towards guidance from reputable bodies, such as NICE in the UK nice.org.uk/guidance. This helps people to see the pathways from diagnosis to the treatment options also available. People also tend to trust the likes of our National Health Service (NHS) website for health information nhs.uk and pages provided by disease-specific charities (e.g. for arthritis, Versus Arthritis versusarthritis.org/about-arth...)
I think it's key we encourage people to think, 'Can I trust this information?' 'Is this statement supported by good quality evidence?' In the current climate, these questions are so important, and I think there's more we can all do, particularly sites publishing health information, to clearly inform people of where information has come from.
Thanks for the reminder of NICE Simon! I think the navigation of the information deluge out there for us patients is one of the most challenging parts of diagnosis and treatment of any condition. However, being informed is key to being an activated patient. I regularly source info from reliable organizations associated with my condition e.g. braintumour.ca/ but then also outside of Canada e.g. thebraintumourcharity.org/. I also used reputable hospital websites such as mayoclinic.org/ to source more general info. Pubmed ncbi.nlm.nih.gov/pubmed/ is somewhere I do go when looking for very specific info however I need to ensure I understand what the studies say (sometimes Dr Google needs to help me here!)
I usually go into a conversation with some awareness of possible next steps if a treatment isn't working. So that also means I have generally researched my options. A google search is a simple place to start, but it's not the end. I personally will also reach articles in PubMed, but not everyone has access to such a resource (for shame!). I will ask around my community as well for peer advice, and all of this helps inform my discussion with my care team, who I make my final decision with.
I never realized what a barrier paywalls were until I left academia! I often have success in getting access to a PDF if I reach out to the authors.
Navigating the landscape as a patient is SO hard. It's even harder when someone has multiple co-morbidities or varying combinations of social determinants of health. Sharing best practices is essential to level the playing field.
Thanks for the great resources Simon! There needs to be a greater emphasis on pushing credible content digitally to meet patients where they are. There aren't enough physicians, caregivers, hospitals, healthcare leaders on the likes of social media to provide credible content and drive meaningful conversations. This is where patients are. The majority are looking for credible content. Unfortunately, there are too many people with snake oil schemes, non-science based evangelists, and celebrities using their platforms to push dangerous suggestions to the public with zero medical expertise. I see this as a major concern.
I like to start with Google Scholar. It's a great place to find sites of annals and organizations for reliable evidence. Though you may not find your answer; it can lead you to new places you may have not found in a regular Google search.
I am fortunate that my son is a third year dermatology resident, so I contact him often when I have specific medical questions. When I search the web, I use PubMed or the Centers for Disease Control (CDC) websites. Paywall can be a barrier, however, some local libraries have free access to websites that have paywalls. I believe that anytime a patient researches the web for treatment options or healthcare concerns, they should discuss his/her findings with his/her physician. It is great to know your options, but it is more important to know what options are legitimate.
Yes! Excellent tip!
Perhaps because we approach medicine or health as a "good, " we easily think about outcomes as a way to "measure healthcare" as if healthcare is something we can have or not have, something to buy and sell and trade and invent. But health care is a service. A relationship. These things REQUIRE the full engagement of both parties. How did we come to belivee that patient engagement is a bonus? I am asking some tough questions of my employer, like how many of you have paid patient participants regularly attend your staff meetings? Your quality and safety meetings? How many have patients answering patient complaints or collecting patient satisfaction surveys? How many patients co-designed your quality projects? Your clinic spaces? Your EMR's? Your methods of outreach, your workflows? How many patient stories of inequity and disregard and harm do we need to hear before we listen?
I loved your comment, Jamie. Amen. Here's an analogy for the unconverted. Imagine getting in a taxi in NYC and saying, take me to the airport. You might end up at LaGuardia when you wanted JFK. Without understanding what your patient is trying to achieve you have the strong possibility of providing the wrong care, achieving the wrong goals.
When we design research around treatment we often focus on disease progression and length of life over quality of life. Older adults in one survey prioritized independence as most important, yet we don't test which procedures, surgeries, treatments impact the ability to remain at home.
But times are-a-changing. While the members of greatest generation were more deferential to their clinicians, boomers come with research from the internet. And the Gen X and Gen Y folks trust each other more than their clinical team using social networks to check information. In other words, get ready. Innovations in care will increasingly be developed with and by those you care for. And that will benefit us all.
We have become so laser-focused on the diagnosis that we have forgotten about the life happening around it. Patients need to bring their values, preferences, and needs to every interaction and discussion in health care.
Innovators, entrepreneurs, startups all need to invest in collaborations with patients in order to ideate, design, develop, and launch technologies and solutions that will bring authentic value. More and more digital tech solutions are seemingly being developed to acquire massive amounts of behavioral, genetic, or consumer data than bringing actionable insights and improved outcomes to patients. When priorities aren't aligned with bringing trust back to the dr patient relationship, joy back into medicine, and avenues to get patients to truly take the drivers seat in their care, we will never shift from fee for service.
Love your question statement Jamie! It baffles me that end users, patients, are not considered, asked or a part of design in most parts of healthcare and technology that is rising from it. It only makes sense to ask those who have lived it, gone through it or still going through it. It seems as if decades have gone by where all the mega analysis has been held inside the system and now it's showing and sometimes in irreparable ways. Time to engage the patient, caregivers, family and advocates who can provide thorough information of the 24/7 life that no one inside the realm can imagine.
Jamie, we seem to be following a common path focused on the "whole person." 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 issues are best handled via primary care - behavioral health integration through a whole-person therapeutic approach to high value care. Please see my LinkedIn post at linkedin.com/pulse/behavioral-.... I welcome your feedback. Thanks, Steve
I believe that everyone benefits when patients are engaged. Personally, when I am engaged in my care and my provider is engaged with me, I have been been more likely to stick to the plan because I agreed on it with him/her. I also felt I was heard and was more confident that I was receiving good care. I have definitely avoided life threatening complications from either intervening myself or through my family, and I have saved a lot of money for me and the system by avoiding duplicate tests and procedures by making sure my providers had my past records. I feel like my providers would say that over time they got benefit, even if at times it might feel like it takes more effort to review my information or to discuss treatment options in detail. Who do you think benefits most and how?
Morgan, hats off to you for taking an active role in your health and care. Like you, I also take an active role as an engaged patient. We also incorporate patient engagement in work of The John A. Hartford Foundation to improve the care of older adults.
True patient partnership and engagement happens at three levels:
1) patient/ clinician interaction - to understand goals and values and provide care that is concordant
2) health care delivery design - to recognize and address barriers to care and make the care and environment supportive of patient/family needs
3) research design - to ensure we are asking the right questions, materials are understandable, research addresses patient concerns
4) policy/payment/measures - patient input is critical to supporting activated patients like you and achieving value (better health outcomes at the same or lower costs of care)
As a clinical example, I live with stage 4 breast cancer (yes, that is advanced and incurable cancer). My oncologist worked with me and supported my not having a mastectomy since the cancer is spread beyond the breast. I have saved well over $1 million to date, feel great, work and play by choosing less burdensome forms of treatment. And I have outlived most with my disease at my stage. My oncologist and I discuss goals and values. This level of engagement is even deeper than avoiding duplicate tests. It gets to the heart of what matters to people and is the ultimate partnership.
Amy hit the nail on the head at the beginning and the end - a frank discussion betwern patients snd physicians describing needs, goals and values.
It can be applied to side effects and toleration of meds all the way to the end of life issues relevant to having a living will, DNR, healthcare proxy and power of attorney when you as the patient own what might be your last decision.
Having a physician that respects your wishes and honors your choices is part of care.
This can't be emphasized enough: patients need to bring their values, preferences, and needs to the forefront of every treatment planning discussion. I have witnessed so many heart-breaking situations that could have been at least proactively and candidly addressed by discussing patient values, preferences, and needs. For example, the newlywed young woman who was diagnosed with cancer and fertility preservation not discussed before starting treatment 2 days later. She was devastated to learn she would not be able to have children of her own. The toll on mental health and emotional/spiritual wellbeing is immense. This patient was fully "engaged" in her health and care. We can and must do better.
Physicians can be so laser-focused on the diagnosis and reaching a particular clinical outcome that we forget the human life that is happening daily. There was a gentleman I worked with who was looking forward to attending his nephew's wedding. Never having had children of his own, he would reminisce about his nephew growing up, clearly being almost like a son of his own. His care team did not work with his wish to attend the wedding, continuing aggressive treatment that left him so debilitated he ended up in the ER with uncontrolled nausea, vomiting, fatigue, severe neuropathy, and mucositis, ultimately missing the wedding. This patient was 100% "engaged" in his care, but the care team was only focusing on the cancer. We can and must do better.
Everyone benefits through engagement and collaboration. It must be a proactive roll from the patient/caregiver side and 3 pronged assessment on the clinician side; physical, spiritual, mental well being. When everyone comes to terms on all three aspects that's where the healing begins.
There are many barriers patients may face in needing to advocate for themselves. Fear of questioning a physician, shame and stigma associated with sensitive diagnoses, embarrassment or feelings of educational inadequacy, shock or intense grief, language and cultural barriers, as well as physical, mental, and emotional disabilities are examples of barriers patients may struggle with overcoming. Who is responsible for advocating for patient's values, preferences, and needs when they may not have a voice?
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If you cannot be firm with your physician, bring a caretaker or friend for support and to take notes.
But first come in with questions about your condition, care, options and prognosis. Do not leave until your questions are answered.
Take charge of the conversation to get info that you need to deal with your disease.
Use the notes for future questions.
A friend who owns a travel company told me she’s never gotten out of Russia without paying a bribe. When she brings a tour to Russia, she pays the bribe for everyone on the tour. Medicine is run far more ethically than, apparently, travel screenings by Soviet bloc customs agents are, but this little anecdote serves to make a point: If you’re new to being a patient, it can be hard to know how to act. It can feel foreign, stressful, high-stakes, and overwhelming.
Some advertising tells you you’re a customer. But healthcare is not a commodity and you can’t order your own treatments or meds. Taking the tone you use when you send back the wrong coffee order is not a good plan.
Some people tell you you’re a patient and your doctor is there to care for you. A brief appointment with an orthopedic surgeon can get you a treatment plan but leave you without the feeling you’ve been seen, heard, or cared for.
ER discharge plans tell you to follow up with your specialist – you’re expecting that in a few days, but you get offered an appointment in a few months! What now?
This is why having experienced friends or family, or peer to peer mentoring arranged via social media – or having a professional advocate – can dramatically lessen your stress, your uncertainty, and improve your results. You can go to 100 doctor’s appointments and still get surprised by how differently the 101st goes. We all can. But… Help before, during, or after the appointment from SOMEBODY willing to talk it all through with you can be a godsend!
The first point here is that we should be promoting a healthcare system culture where people are valued, beyond a mere 'number' on the records. All members of healthcare teams, from receptionists, through to clinical nurse specialists, consultants and the many other team members also have a really important part to play in ensuring people feel valued, at ease, and able to raise their thoughts and concerns. Unfortunately, I see all too often where patients are 'lost' in the system, and nobody seems to take responsibility for their care. Of course, we must be advocating for, and supporting people to proactively take control, as well as supporting parents, partners, children and other caregivers to advocate for their loved ones - BUT it's not always possible. In days gone by, the family doctor (GP) would often be the co-ordinator of care across primary, secondary and tertiary healthcare providers. Whether an emergent, new role for care co-ordinators/supporters comes into place is another topic...!
Bottom-line: Don't go at this alone! Bring a care partner. Have someone to lean on. Never stop asking questions until you are crystal clear on next steps. The value of peer-to-peer support is priceless!
A solid YES all around! Be prepared for your dr appt. In the same way that you wouldn't go to a business meeting unprepared, don't show up to your appt unprepared. Ask for help! Bring a carepartner.
People who do not work in the healthcare industry do not understand the underlying workings of the offices and departments. No different than the many who do not work in the legal field. Both fields take people to the "deer in the headlights" look. It becomes too much for the individual and/or families. It is so important to have an advocate help along the way. Advocate could be family, friend, caregiver or professional. Sometimes I wonder if the individuals who do work in the healthcare industry forget from time to time that initial feeling of the first time and knowing nothing
Just 10 years ago in 2008, there were about 34,000 different drug products on the market. In 2018, that number has soared to 130,000! That's nearly 4x in just a decade. It's an onerous task for physicians to keep up with all these options, what about for patients? How do you want to be involved?
I told a group of C-Suite healthcare execs from the 100 biggest hospital systems that to me they were all ancillary staff. The core of the practice of medicine is the clinical encounter between a doctor and a patient in need of medical healing. The role of analytics is to advise, not to compel. I’ve developed new uses for 5 existing prescription drugs. They have transformed my family’s lives. Were someone to force my doctor to prescribe a different beta blocker than the one I’m on for my rare autonomic condition, my life would fall apart. Scarier yet if power structures worked to prevent him from letting me try this drug in the first place, my life would have never come together! I understand that often doctors do face challenges when prescribing some meds. With rare disease patients, this is inappropriate and dangerous. It is an effort to subvert the central feature of the practice of medicine: the clinical encounter. So, provided the role of data is to inform and advise… then, better, more usable data is absolutely a way to help physicians manage the complexity of proliferating prescribing options. I’d like for firms like Walgreens to publish how many scripts for each med they fill in a year. That list would quickly allow for refining by drug class or mechanism of action. And it would give prescribers and patients a better understanding of how often each drug is used. This could, for instance, help prescribers look into other less used options for patients who’ve had a good but suboptimal response to the most common members of a class of drugs. They could consider: Why this one over that one? Are we missing something that could help this patient? My asking those questions changed my life when nothing else would.
In an ideal world, patients should have the ability to records their symptom control, or lack thereof, their side effects, their experiences with therapies as a record for other patients to use in treatment planning. Patient-reported outcomes are not emphasized enough. In the case of autoimmune conditions, there may be many choices of biologics to select from, it's literally eenie, meanie, mynee, mo. By building a PRO wealth of knowledge that could then over time show trends, it would be helpful to patients.
Choices are important, but can be overwhelming. Asking the right questions to (and communicating effectively) with your clinical team is critical for healthy outcomes. The Cancer Support Community has a decision support counseling program called Open to Options® that can help patients prepare for an appointment with physicians. Taking into account the values a patient has regarding potential side effects, and the practical effects on their daily lives and work, can lead the team to select the best option. In a brief one-hour session, an Open to Options® Specialist can help patients develop a personal list of questions and concerns that will help patient and doctor explore the unique situation and develop the best treatment option for the individual. Open to Options is available in English or Spanish for people with any stage of cancer and available through our affiliate network. If you do not have a Cancer Support Community or Gilda's Club in your city, call our toll-free helpline: 1-888-793-9355
cancersupportcommunity.org/Ope...
All services are offered at no cost to patients & caregivers by the Cancer Support Community, a 501c3 non-profit organization.
Thank you for sharing this!
Oh my goodness, the days of old, of trying medications, finding which ones make you feel worse and the ones that may help feel a bit better was/is just shots in the dark and just awful to endure.
I'm hoping genomics, microbiome and pharmacogenics will help filter out the bad. It's becoming somewhat more affordable than in the past for genetic testing. This would be a great way for clinicians to determine which medications or alternatives could help individual patients. I love the fact that testing nowadays can determine how a person metabolizes medications.Precision medicine is where it's at since one size does not fit all.
But while all the above was getting in order, thousands of social media groups and forums have been sharing which meds and alternatives helped in their specific disease/condition. Wouldn't it be wonderfully helpful to be able to aggregate all that info?
We are all unique in our genomics, disease's progression, our reaction to treatment, in our progression free survival and our relapse.
In my oncolgist's office, almost all of us are being treated with different medications and/or combinations.
Our differences mean that we have to be informed (by others and ourselves) and have trust in our physicians and the iuse of nnovation - the art and science of care.
Health care policies impact patient care, access to medical services, procedures, and medications. Policies can have profound impact on a patient's quality of life. What is the role of patients on local, regional, and national levels to influence health care policy decision-making?
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The hint at the answer lies in the question itself. Every aspect of healthcare is affected by healthcare policies. As major stakeholders in the healthcare system, patients SHOULD play a corresponding role in influencing policy-making. There should be appropriate channels for patients to provide their perspective on what works and what doesn’t, highlight inefficiencies and suggest ways to improve. Growing numbers of patients and their caregivers/carepartners want to be empowered to participate in their care and have a measure of control over the medical care outcomes. It is in everyone’s interest to let them.
I agree Irma! I find that patients and their carepartners need more information on how to get involved and why being involved, sharing your story, is so critical. We need to also recognize that not every patient can physically, mentally, emotionally travel to lobby. Bring the policy making to patients where they are. It can't continue to be behind closed, traditional doors within an elite group of people. We must push for diversity, inclusion, the real-world patient and listen to their experiences.
I agree. The patient story/narrative is powerful, I have witnessed its effect when visiting Congressional offices during Rare Disease Week and a patient had an episode related to their rare disease in front of a Congresswoman' staff.
And patients must communicate with each other to talk about their disease with other patients that have the same condition to help those who cannot advocate due to time, finances and physical condition. Act as a proud representative of these people when you attend any meetings with government officials.or decision makers.
Bob, do you have any advice for how patients can start getting involved in policy? What's the first step?
Networking.
I got involved with the Rare Disease Week through friends I met at the major conferences (ASCO, ASH and BIO).
But there are probably local events related to your specific disease that offer opportunities to learn about lobbying efforts related to bills/issues that can affect you.
if there is a charity event related to your interests, go and meet some of the people and get advice/encouragement from them and the room full of patients and caregivers regarding your desire to advocate.
When someone is healthy, they may pay only peripheral attention to healthcare policy. The people who oppose you may not understand or value the patient perspective. But then… Duck, duck… goose! At any time, life could conspire to make them a patient. So, if you are an engaged patient, you should pay attention to healthcare policy – at the hospital, hospital system, and governmental levels. Many of the people you’ll be advocating for aren’t sick yet and don’t yet know they need your voice and experience to help represent them.
Great tips, thanks! I have seen work coordinated primarily through disease-specific non-profits and the Beryl Institute Patient Experience Forum is a another group committed to policy work.
Incredible point Doug! That is an important message to share with the general public, about proactive and paying attention to policies and the lobbying process. Social media has created awareness for many different unmet needs that patients face and has a good way of pulling people in to help. As a patient, we need to bring awareness to pertinent topics. As friends, family, colleagues, carepartners, we need to support lobbying missions as best we can.
I think advocacy/lobbying takes a lot of time and effort. I only really learned more about the ins and outs of it when I took a lobbying and advocacy course in grad school. I do agree with sharing your personal story and building up your network, but it would also be good to see more collaboration among nonprofits to work on issues that impact multiple conditions. It's all about building up your coalition with a variety of stakeholders so not just the patients and caregivers, but also get involved friends and family, nonprofits, people in your community, etc. The last piece of advice is always make sure to follow-up!
Reflecting on the many important points made in this thread, I would like to bring spotlight on the Health Activist Fellowship and Health Activist Network. The Fellowship is part of the yearly series of Feinstein Fellowships at Jewish Healthcare Foundation.
Salk Health Activist Fellowship is a unique opportunity for undergraduate and graduate students and professionals in health-related roles to learn the skills, methods and tools to build strategies, advocate effectively and potentially build movements around health or healthcare issues they are passionate about. Salk Fellows are locally-based and focus their innovative projects on the pressing needs of the communities in which they live, study and work. Current and past Fellows become part of the Health Activist Network, an online and in-person network with a mission to “empower health professionals to create the health system in which they want to work”.
Fellows are driven by their personal/family/community experiences. What is unique about the Fellowship is that their proposed solutions are less technology-driven, and focus on policies, procedures and workflows - which are often the strongest barriers to good care. Happy to share more if people are interested, but here are some links:
hcfutures.org/fellowships/salk
healthactivistnetwork.org/
Healthcare policies are complicated because these policies affect not only the patients, but also the providers and payers. Unfortunately, not all healthcare policies are devised for the sole benefit of the patient. I believe a patient's role in influencing healthcare policy is to become an informed voter. Our right to vote gives us the opportunity to choose candidates who will look after the patient's best interest regarding healthcare policies.
Thanks so much Seth! I didn't realize there were lobbying and advocacy courses. I wonder if there are ones that may be scaled down from a graduate school level that could be shared as a webinar or resource for patients looking into basics of lobbying?
Irma you rock! Thank you for sharing these excellent resources! These are helpful not just to patients but also I imagine to physicians and caregivers interested in lobbying. Can't wait to take a deeper dive. Will reach out with questions.
Great point Jackie. It's true, this impacts the way our caregivers can literally practice medicine and care for patients.
Thanks for passing this along and I will share with others.
I am curious if EveryLife Foundation or NORD has a webinar on this that breaks down the basics of lobbying. Will have to do more research on that.
I am intrigued as well as to whether there is a group that offers some type of resource. Let's regroup if we find anything and share the links here.
Ar Rare Disease Week there is a mini boot camp preparing you to lobby on the Hill. Also for advoacy there is now a Patients Rising University site to help.
Thanks Bob! That's very helpful. We will need to compose a list of the resources in the responses here. Great stuff!
Back in the day, I called a Rice University professor who taught and published on government policy. He recommended a book published by Congressional Quarterly Called "Lobbying Congress: How the System Works." I read some of it but my fights for my mom and against government nursing home regulators took me in other directions. But, by now there may be a awesome Lynda.com video course or something like that on lobbying.
Great info and thank you! Good point, too. Process can be used to thwart tech as easily as speed limits rein in fast cars.
In my experience, there are many different definitions and expectations for an “engaged patient”. I sometimes fear that engaged gets confused with compliance. I am more engaged when providers try to relate to my preferences and my life in general. What is your definition?
I cringe when I see patient engagement assessed by for example, "number of clicks". As a patient, being engaged is being a partner in my care. I don't have all the answers. I expect and need my physician's and care team's expertise but I need my values, preferences, and needs considered.
A “disengaged patient” is someone who does not have a regular or recurring relationship with their own *medical* health. They can be a couch potato or fitness buff; they can track their life, calories, and steps with an app or be oblivious. But unless they accept as part of their identity that they are a “patient” – someone who believes they have a recurring need for medical care – then they can’t be an “engaged patient.” The care they seek can be preventative (check ups, physicals) or periodic (annual OBGYN visit) or ongoing (management of a clinical condition or pre-clinical condition), but a person must see themselves as a patient before they can choose to become an engaged patient, which is someone who seeks to manage their medical health through clinical encounters and self-care.
Sometimes it's hard to want to accept being a patient. I know you don't need me to tell you that. There's also a mental health component that our healthcare ecosystem sores misses in providing. There can be a roller coaster of emotions, varying levels of need for support, differences in circumstances. The most engaged patient can hit a point where they feel their efforts are futile. There's a continuous grieving and suffering process that needs to be acknowledged. Perhaps it's the will to want to keep trying to live the best life you can considering your values, preferences, and needs and your personal living circumstances. Sometimes that may mean that one's life needs to be prioritized, not just treatment. For example, I know patients skip chemo so they can attend their grandchild's wedding. There are parents who will skip their child's infusion therapy for a chronic illness because their child has a big sporting event they are looking forward to or a milestone like a graduation, that if they "adhered" to the treatment, they would be too sick from side effects to attend those events. I think though traditionally "non-adherent" these individuals are still engaged in their care. The more I think of it, the more I can't stand the labels that are traditionally used to describe patients.
I really appreciated Grace's reactions to this question. People deal with becoming a patient in various ways - some embrace it, others do everything possible to distance themselves. It's possible that we may be a long way off from reaching consensus on how to define "engaged." Perhaps a better starting point is setting a goal for how to become "informed", and let engagement grow out from there.
It all starts with building a trusting relationship. A connection.
Someone who studies for their "test". They and their caregiver talk about past meetings and develop questions for their physician. Take ownership of the limited time you have!
Doug, I like your approach to describing engaged in terms of responsibility and ownership, and acceptance.
Very astutely described Grace! I've been a tireless advocate for other patients for decades, and even for myself, and have been on many "roller coasters". But once I started dealing with my own cancer, something new opened up - both in empowerment but also in feeling dis-empowered.
Yes, the radiology department staff told me that on nice spring days a lot of people don't come to their scan appointments. I get that. lol. Even more understandable if your treatment will may you feel awful for a family wedding or event. Those are choices patients get to make, hopefully with their doctors. Also, patients hopefully understand when a doctor can't sanction a delay like that but is willing to accommodate it.
Being proactive and taking ownership is definitely key. The Society for Participatory Medicine has an incredible network of people who collaborate on best practices and advancements to help people be more proactive in their care.
I meet many individuals who are keen to partner with patients and caregivers, but don't quite get there. What do you feel are the biggest barriers, and how do you think we can overcome them?
I think to some extent the barrier is within the health system.Not patients or caregivers. They do not have a voice within our system. Once we open up there should be no reason. They are the sick and ill and live their disease in our system. They should have the best ideas... we just need to listen. Yaquta Patni MD
I dont think its that clinicians dont want the patient voice to be heard. I see:
1. they equate only negative patient feedback as "the patient voice " in satisfaction surveys
2. they dont know mechanisms to engage patients in their own hospital (if they exist)
3. lack of time
My experience as both a healthcare worker and patient has given me a a broad view of how the paradigm of health care has shifted over the years. I believe one of the biggest barriers that healthcare providers/caregivers and patients face begins with healthcare insurance reimbursement guidelines. I believe these guidelines are not always patient centric, which negatively affects patient care. I would rather let my doctor, instead of my healthcare insurance company, decide what level of care is in my best interest.
This is a major pain point for caregivers and patients! It's so frustrating when a physician with medical expertise who has spent the time with the patient, carefully diagnosing the problem be told their recommendation is denied, needs an appeal. Patients are often left in limbo for weeks or months fighting to get the care their doctor recommended. IIt can be disheartening.
These are all significant barriers. I would love to see more digital tools to help patients be more prepared for their appts with their physicans to make better use of the precious time that's available. I always tell patients, "You wouldn't show up for a business meeting unprepared. You can't show up to your appointment unprepared either." Small steps to be proactive could make a different. We need to strive for more partnership. Negative feedback can't be the only thing patients are sending their care teams. I encourage patients to write thank you notes to their doctors, nurses, staff. It's a great way to pass the time while waiting. I always smile when I see patients slip a hand-written thank you note to someone as they are walking out the door.
I agree and hear that sentiment from many of my colleagues in medicine: that their hands are tied. From a patient perspective, we need to step up our game because no one is coming to save us. Patients need to be told and taught that they need to be proactive in their care. We need to life each other up.
One of the biggest challenges is that a lot of times we assume we know what is best for others without simply asking them what their challenges and needs are. It starts with building a relationship with the patients/caregivers and learning more about their story rather than jumping to conclusions. I know a lot easier said than done but we need to do more listening before assuming we know the next steps.
Listening can be the most powerful tool we use! I also encourage patients and their carepartners to articulate what their values, preferences, and needs are. For example, treatment plans need to be conscious of the fact that there is a life being lived with the diagnosis. If we only treat the diagnosis without being mindful of the life that is happening simultaneously, it will lead to "non-compliant" circumstances.
I would somehow like the researchers/clinicians to host patients and caregivers at the institution that is doing the clinical trial. Have researchers explain what the process is and patients and caregivers tell how it differs from the ideal.
A face to face to see the people they are trying to help puts more humanity into the equation - and real world data..
Such an excellent idea! That feedback and experiential learning could be such a treasure trove of information as well as humanizing both the patient experience and injecting purpose into the work being performed at the trial site. So many patients tell me that simply having their story heard helps them through their personal grieving process and heal. More of this please!
I see and hear the same situations. Clinicians have more work to do, and more patients to see, but less time to do so! We are very much entering an era where people need to be able to speak up for themselves, or have the necessary support in place (either caregiver or through some other means within the hospital setting) to be supported to engage proactively in shared decision making.
Well said, Seth! Your comment relates to one of my favourite quotes: 'Most people do not listen with the intent to understand; they listen with the intent to reply'. By listening to patients AND their caregivers, and working with them on agreeing a way forward, trust can be built - and trust is a fundamental aspect of a positive relationship.
There are quite a few examples of this happening... slowly but surely! I'm very keen for research and clinical care to be intertwined, enabling people to see what happens, have the opportunity to participate, and also to have the chance to be able to shape that research to better meet the needs of their community!
What specifically would you want to be taught that is helpful and not patronizing?
I and my team spend much more time on phone in appeals and prior autos than I do talking to patients on the phone. Think about how backwards that is.
Favorite question EVER from a patient : what have I not asked about that I should have ?
I feel we need to be encouraging people to think about evidence for starters. Promoting self-management skills I also think is key (e.g. tracking symptoms, attending appointments prepared with questions etc). But a lot of these things cannot be taught within the clinical setting - well they can, but whether people will then utilise those new skills is another question. Partnering with external organisations (such as patient advocacy organisations) is one way we are seeing this work, and through peer-led support to enable people to develop the skills they need to manage their health and wellbeing.
Ridiculous. There’s a measure to report to hospital leaders and the AMA. Doctors need support from their organizational leaders to pushback on this insanity.
Why aren’t we holding the Dept of Education accountable? Health experience literacy needs to be taught incrementally at schools, in a age appropriate manner, K-12. It isn’t the doctors job to teach these life skills.
Adrienne- I definitely agree with number 1 and I feel like in society we are more likely to give a negative review than a positive one. Personally, I feel like if a product I buy doesn't work, I am more like to give a bad review than a good review for a good product. We need to find a way for patients and caregivers to provide positive experiences not only with clinicians but with one another.
We are further than we have ever been before on partnership but there still remains old walls of thinking. We need to meet in the hospitals, offices and/or organizations that deal with patients in any aspect. It seems as if we are still in the phase of trying to convince scientist and clinicians that we can help them with design and output.
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Sure. I support talking about research options when appropriate. The nuances that we don’t always talk about often surprise patients I talk to. the goals of research are different than clinical care. Like in care, the goal is to care for the patient. In research, the goal is to get data. In care, the goal is to help you. In research, the goal is to help others. Etc.
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I regularly discuss research findings, conference proceedings, clinical trials, basic research during appointments with patients and their doctors. I leverage social media to connect me to the most up to date references and findings. For example, I follow conference proceedings by their official hashtag for updates on clinical studies, trials, guidelines, etc and share that with patients and physicians. Tweetchats can be a wealth of information around particular disease-specific or broad healthcare topics, as well as opportunities to connect with expert thought leaders, advocates, non-profits, and patients. I follow many academic research centers and teaching hospitals on Facebook and share their status updates on their latest scientific accomplishments and findings, tips for patients with my network. I can see the ripple effect as members in my network like and share the updates with their own circles. We all can be proactive in connecting the dots here. Publication paywalls greatly hinder the ability to gain access to publications. Definitely something I missed and took for granted while in academia!
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There is a time constraint on how much time a physician can spend discussing research when it is applicable. Patients need to do their homework. Prepare a sentence or 2 summarizing why they are interested in perhaps a trial or different treatment option.
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I always ask my oncologist and the clinical trial staff what other trials they are doing. Even if they are for other cancers, I like to be informed and able to mention it to patients affected with that cancer - it may help them.
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Grace, I completely agree about time constraints! However, I do think that a change in culture is emerging, where research isn't seen as something separate to clinical care, but an integral part of an individuals' care plan. It's not necessarily all about what trials are out there, but in promoting a culture whereby the value of research is seen in practice (such as empowering patients to think critically about health interventions). I think it's key for patients to come prepared with questions, but we must also realise that not everyone is capable of doing that, so it's very much a two-way conversation and dialogue.
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Thanks for being such a great advocate Bob! You make a great point: how can we all connect other patients to the info they need. Be the connector whenever you can!
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I would like patients to know that clinical trials are not just for patients in dire need - they also can be another treatment option.
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Part of me would like patients to know very early in treatment what trials are available for their disease. However, they may not be eligible and also coukd be overloaded with their recent cancer diagnosis. But.....good to know that trwatments are being pursued - it offers hope!
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I discuss clinical studies i'm involved in with patients and i'm sure many other clinicians do. But is that enough? 2 patients with disease x may want different outcomes. Patient's today don't have the opportunity to select trials they participate in based on the outcome (endpoint) they desire. Mostly, patients are enrolled in the trial their treating or referral clinician is participating in. May be we can do some work around this area. Happy to hear your thoughts
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You bring up an excellent point Dr Fombu: are the clinical endpoints in studies aligned and striving for what patients feel is important/valuable from treatment? This is why patients and their carepartners need to be involved in the upfront design, planning, launch, and post-launch of trials in a partnership that fosters communication and commitment.
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I think that it should be brought up and discussed. It's a high percentage of people who have never heard of research & clinical trials or how they can participate.
On the flip side, as a patient advocate/leader, we try to keep apprised of all the research and trials in order to share with the appropriate disease/condition groups that may be beneficial. Keep that information awareness flowing : )
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You do such an amazing job of advocating for the patient community and connecting the dots! I agree Lisa, information must keep flowing. Advocates can play a significant role in dissemination of critical, credible information, especially by leveraging social media in a strategic manner.