#THCBGang on May 5 was an extraordinary special on cancer & navigation. Everyone on this gang has been touched by cancer as a patient or caregiver.

Joining Matthew Holt (@boltyboy) will be fierce patient activist Casey Quinlan (@MightyCasey); Jennifer Benz (@Jenbenz); Suntra Modern Recovery CEO JL Neptune (@JeanLucNeptune); patient advocate Grace Cordovano (@GraceCordovano); policy consultant/author Rosemarie Day (@Rosemarie_Day1); Jeff Goldsmith; Jennifer Benz (@Jenbenz); PLUS Adam Pellegini (@adampellegrini) from cancer navigation company Jasper Health. It really was a great conversation about what to do (and what is being done) to make the experience better for people with cancer and those that love them.

You can see the video below & if you’d rather listen than watch, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.

By GRACE CORDOVANO

Attending HLTH 2021 in-person in Boston solidified that there is no comparison between attending live vs. virtual conferences.  While content and presentations can be solid both virtually or in-person, it is the energy of the connections that are made between scheduled presentations and the conversations that are shared throughout that move the needle. Kudos to the organizers of HLTH 2021 for prioritizing the safety of all in-person attendees with COVID-19 vaccination requirements, proof of negative PCR testing within 3 days of arrival, and mask requirements on-site.

After reflecting on all the proceedings, the conversations, and the experiences at HLTH 2021, here are eight reflections on the event from the patient and carepartner perspective.

1) Patients and Carepartners (Not) Included

These words were the taglines of HLTH2021:

Dear Future: We’re coming for you. #HLTH2021

The largest and most important conference for health care innovation

A battle cry for improving health care, but I can’t help but wonder, who’s “we’re”?

The agenda and stages at HLTH2021 were filled with some of the biggest, most respected names in the health care ecosystem. Unfortunately, no patients were speaking from these stages. A search of the agenda and speaker list for “patient” showed entries for “patient experience” or “patient” in the form of an executive title. Many panels and discussions fell short of the real-world experiences of living life with a diagnosis or multiple comorbidities, the difficulties of barriers to healthier living that are caused by social determinants of health (SDoH), and disgraceful realities of the inefficiencies of workflows patients and their families face. There were no patient or carepartner champions sharing the positive impact that a company’s brand has had on their or their loved ones’ lives.

Numerous stakeholders said, “We are all patients or will be one day.” Be wary of this misconception and its associated assumptions. There is a spectrum of patients’ experiences of living their lives with a diagnosis which is made unique through the implications of SDoH, lack of health experience literacy, lack of peer health support, and lack of accessibility supports. One innovator’s (often privileged) experiences should not be assumed to be the collective experiences of all patients across all disease states and life’s circumstances. Instead of assuming, #AskPatients.

My advice to innovators:

• Demonstrate real-world impact with actual patients and carepartner telling their stories.
• Hire patients and carepartners as part of the leadership and decision-making team. Don’t forget about the power of surviving carepartners- the people who navigated and coordinated care for their loved ones who died from their disease. They have a wealth of wisdom from a unique perspective to share.
• Be bold. Invite groups of patients and carepartners to reflect on your brand’s work, analyze real-world value critically, and ask tough questions.
• Sponsor patients and carepartners to join conferences in-person or, at minimum, virtually. Check out #PatientsIncluded for more information on how to get started. Instead of spending precious budgets on conference swag, invest in sponsoring a patient and celebrate it. That is cutting-edge.
• Celebrate patients and carepartners that are working tirelessly to make a difference. A special shout out to Finn Partners for sponsoring the award for Journalistic Excellence in Amplifying Patient Voices that was awarded to Jen Horonjeff, founder of Savvy Cooperative, at the Power Press Awards Gala. 

2) Behavior Change (or lack thereof)

There was no shortage of conversations about the holy grail of successful behavioral change. There is unanimous agreement from stakeholders that changing patient behavior is complex. More frequently than not, patient behavior is not the problem. What are patients and their families to do when it’s not their behavior that is the problem, but the ecosystem’s behavior is wreaking havoc? For example:

• A patient’s board-certified physician confirms that a patient needs a gold standard treatment for their cancer diagnosis or imaging to get more clinical information. The insurance company denies the treatment or the imaging prescribed by the board-certified physician, deeming it not medically necessary. Who is responsible for the delays in care that ensue?
• A single mother who is disabled has numerous comorbidities, including high blood pressure. She repeatedly goes to the emergency room because her blood pressure is poorly controlled. She is told to watch her salt intake and often shamed for not “doing it right.” The patient is discharged from the emergency room after spending most of the day in the ER. No one asked if she had healthy options at home or groceries in her refrigerator. No one asked if she needed support from a nutritionist. No one listened and wiped away her tears when she said she didn’t want to die of a stroke like her mother did, and she wants to do better but doesn’t know how. Who is responsible for bridging these gaps in care?
• A patient has been trying to get her medical records to switch to another cardiologist. Her previous cardiologist does not respond to the repeated requests for copies of records to be sent to the new cardiologist even though they were requested six weeks in advance of the new patient appointment. The new cardiologist is visibly frustrated that the patient can’t answer questions about their medication history, tests that have been performed (or not) and proceeds to order extensive bloodwork and various cardiology tests and imaging. The patient insists that they think these tests were all recently done. The new cardiologist says, “You didn’t bring me a copy of anything.” The patient has the tests repeated only to have the insurance company deny reimbursement for some of them because they are medically unnecessary. The patient is now responsible for high out-of-pocket costs that they cannot afford, may be documented as a “poor historian”, and assumed to have poor health literacy. It shouldn’t be this complicated to coordinate care.

Behavior change needs to encompass all people behaving in the health care ecosystem. Efforts for positive changes need to be directed at all stakeholders, not just patients. People who live in glass houses shouldn’t throw stones.

3) In Sickness & in Health

Conferences are an integral part of health care innovation. These experiences are designed to foster an environment for networking, connection, the challenging of the status quo, and the celebration of grit and innovation. Conferences bring learning, laughs, intrigue, brainstorming, the dawn of new collaborations, and healthy competitiveness. Conferences should be recognized as a part of health care. Why do we wait to engage with patients and their families only at the point of care? We routinely hear an emphasis on the need to invest in prevention, building patient trust, and encouraging patient engagement and adoption. Why aren’t patients included in conferences like HLTH2021?

As I walked the convention center halls, I carefully read all the big names on the various rooms that were reserved. Many had playful signage that said “Do Not Enter, Beware of Dog,” “Beware of Flesh-Eating Piranhas.” Imagine if there was signage celebrating: “Patient Think Tanks,” “Patient Innovation Labs,” “Proud to Welcome: Patients and Carepartners Joining Us Today!”, or “Patient & Carepartner Experts for Hire” (to address that talent pool gap everyone is talking about). We must dream bigger.

4) Data Dead Ends

Numerous exhibitors had innovations that could make at least incremental improvements in the lives of some patients and families. When I asked if data collected could be shared in real-time and actionably with the patient or with the patients’ carepartners, there were two camps of reactions:

1) company representatives looked perplexed and said data only went to providers or

2) representatives quickly said it was going to be a future offering.

The future is now.

We cannot continue to only send results to physicians. If data is being collected and used to guide decisions about a patients’ care or coordination of care, patients want and need access to it as do their carepartners. In an environment where we are collectively working towards more robust interoperability, too many in digital health, RPM, and AI/ML clinical decision support are intentionally creating a new avenue of digital innovation data silos. Hard stop.

5) Benefit$ to Who

As a patient, it’s becoming more and more difficult to understand if a company’s main goal is to truly transform people’s lives or if it’s really in the business of simply collecting as much data about the patient for secondary commercial purposes. As a patient, this weighs heavily in light of astronomical health care out-of-pocket costs and growing rates of financial toxicity, continued poor coordination of care, poor outcomes across a number of health conditions and disease states, and lack of attention to preserving autonomy, dignity, and quality of life.

There were no candid discussions about patient digital dignity and digital rights. Patient groups and advocates, such as The Light Collective, are demanding candid discussions and policy changes in the realm of data privacy. It is disappointing to watch leaders in innovation completely avoid addressing these critical issues. If companies were required to report their revenues from aggregated patient data streams, would their products, services, and offerings still be celebrated as transformative, improving outcomes and peoples’ lives and addressing health inequities? Show us the data.

6) Tin Man Seeking Heart

We say we are moving away from “doctor knows best” to patient and consumer empowerment but more and more, things feel like we are moving deeper into “tech and AI know best.” In many cases, our tech innovations are like the Tin Man in the Wizard of Oz seeking a heart: empty and longing for connection. Tech-enabled human touch is critically important. Tech is also not always the solution and cannot stand alone without those who have the heart to carry it forward. Investment in people who can deliver better patient support and customer service is critical.

Here are a few examples of tools and innovations that truly can make a difference in peoples’ lives, the power of which should have been more celebrated at HLTH2021:

• FamboxRx is a fresh grocery delivery service that now accepts Supplemental Nutritional Assistance Program (SNAP) benefits for fresh groceries, dry goods, and medically tailored frozen meals. This is exceptional news for patients with Medicaid and participating Medicare plans who may be living in poverty, with food insecurity, and in food deserts with limited access to healthy food choices. FarmboxRx meals are tailored and supported by a nutritionist and can even be ethnically customized. This is a strong example of innovation and public-private partnership that can drive substantial real-world change, helping support people in meeting their health goals.

• AARP Innovation Labs showcased a smart cooking pan that can help users understand the nutritional value of the meals they are cooking. This is one of the most challenging things people struggle with at home when they prepare meals for themselves and their loved ones: am I really cooking healthy? Empowering individuals with tools such as a smart pan can transform the way that people care for themselves and the ones they love.

• The benefits of animal and pet therapy in a variety of disease states, during in-patient care, chronic illness, and as emotional and mental health supports are widely documented. Having puppies on-site at HLTH 2021 brought immediate joy to all who passed by or jumped into the dog park to play. We need to look deeper past the novelty of puppies on-site and explore the boundaries of real-world implications on patients’ lives. How can the foundations of this exhibit be reimagined to bring more joy, companionship, and unconditional love to those struggling with complex illnesses, living with mental health diagnoses, to the elderly, and those who may be alone and in need of companionship? Pets can play a greater role in health’s future as a solution. Pair this with RPM or patient-reported outcomes. I double-dog dare someone to prove me wrong.

7) Shots! Shots! Shots!

I wish there was a way to get my flu shot while I was on-site at HLTH. We talk about in-person health care delivered in the clinic, virtual care, and at-home care. What about care where we are, like at a health care conference or work? COVID-19 testing was readily available, which was exceptionally well done. Anyone planning a conference in the fall should have mobile vaccination clinics for flu and COVID-19 vaccines available. Bonus points for having digital check-in for patient intake and doing away with paper forms on a clipboard and for getting proof of vaccination to my care team electronically.

8) Getting Stuff Done (GSD)

With so many high-power players and health care innovation celebrities under one roof, I would have loved to see a hackathon or connectathon-type format in lieu of some of the traditional panels. The HL7 FHIR community is one example of connectathons done right. Real-world challenges faced by different stakeholders, especially patient unmet needs, should be crowd-sourced prior to the conference event. Top challenges should be selected for live innovation, with updates on progress, successes, struggles, and solutions provided in real-time. This needs to include representatives from all stakeholders. There is plenty of low-hanging fruit that is ripe for the picking that could easily be solved if people truly collaborated in the sandbox and authentically wanted to incrementally transform health care and meaningfully address SDoH. Only then can we say, Dear Future: We’re coming for you.

Grace Cordovano, PhD, BCPA is a board-certified patient advocate specializing in the oncology space, a patient experience enhancer, and information unblocker.

It has been WAY too long and for too many reasons (conferences, travel, a hurricane flooding out 4 East Coast guests) we haven’t got together but #THCBGang is back.

Joining Matthew Holt (@boltyboy) will be fierce patient activist Casey Quinlan (@MightyCasey);  THCB regular writer Kim Bellard (@kimbbellard); ; medical historian Mike Magee (@drmikemagee); and board-certified patient advocate Grace Cordovano (@GraceCordovano).

We opined a lot on the latest machinations in Congress, we talked about access to data (especially images) and we really enjoyed getting in touch with each other for a great hour!

You can see the video below & if you’d rather listen than watch, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.

Joining me, Matthew Holt (@boltyboy) were THCB regular writer Kim Bellard (@kimbbellard), patient advocates Grace Cordovano (@GraceCordovano) and Robin Farmanfarmaian (@Robinff3), newly-minted VC Marcus Whitney @marcuswhitney, and medical historian Mike Magee @drmikemagee.

We touched on the impact of the extremes of global warming on health! And in a pandemic nonetheless!. Plus the wild world of SPACs, more funding for mental health, and the sausage making of health care’s place in the upcoming stimulus bill. But I’m not sure the group is ready for the big policy move that the pandemic may give us the opportunity to pursue! A great conversation nonetheless.

The video is below but if you’d rather listen to the episode, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.

Joining me, Matthew Holt (@boltyboy) were patient safety expert and all around wit Michael Millenson (@MLMillenson), THCB regular health writer Kim Bellard (@kimbbellard),  futurist Ian Morrison (@seccurve), surgeon & innovation dude Raj Aggarwal (@docaggarwal), patient advocate Grace Cordovano (@GraceCordovano), and policy & tech expert Vince Kuraitis (@VinceKuraitis).

The impeachment barely came up but several of us had direct experience of the chaotic vaccine rollout. Lots of speculation about what aspects of shoring up the ACA in the stimulus $1.9bn, and a bunch of discussion and disagreement about whether the lava is cooling in a new data and technology infrastructure on which to build a new health system. A great conversation.

The video is below but if you’d rather listen to the episode, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.

Episode 35 of “The THCB Gang” was live-streamed Thursday, Dec 10. You can watch it below.

Matthew Holt (@boltyboy) was joined by not one but two of America’s leading health futurists Ian Morrison (@seccurve) and Jeff Goldsmith; Patient advocate Grace Cordovano (@GraceCordovano); health writer Kim Bellard (@kimbbellard); employer health expert Jennifer Benz (@jenbenz); and surgeon and innovation dude Raj Aggarwal (@docaggarwal).

There was lots of conversation about who is going to pay for what health care. What are big employers going to do. How is the vaccine going to roll out and are we ready? What does it all mean for the future of hospitals, doctors, employers, innovation and more.

If you’d rather listen to the episode, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.

The HIPAA Privacy Rule gives patients the right to copies of their medical records, with rare exceptions. When patients need a copy of their medical records, most start the process by calling their doctor’s office and asking for how to get access. The receptionist or office staff point them in the right direction, whether it’s instructing them to write down their request and sending it to the office, pointing them to contact the medical records or radiology department (if the practice is large enough), or assisting them in setting up their patient portal, if the practice is using an electronic health record (EHR). Being able to connect with a person inside the four walls of medicine is often crucial for many patients and their carepartners who may be unsure of exactly how to request their records.

But what happens to those records when a doctor closes or leaves the practice?

Independent practices close for a variety of reasons. Physicians may merge with a large practice or health system, retire, they may sell or close their practice for personal reasons, they may file for bankruptcy, or they may get sick and die. The COVID19 pandemic has had devastating financial consequences on many small, independent, and rural practices, leading to their consequent closure, acquisition, or merger.

What should patients do when their doctor’s office closes, and they need a copy of their medical records? This is especially challenging when a doctor may not have had an EHR, as is the case with many independent practices as well as more rural settings. On September 26, 2020, a tweet from Cait DesRoches, Executive Director of OpenNotes, inquired about how a family member may get access to medical records from her physican’s practice that closed, triggering a robust conversation that led to the realization that patients and families are not well informed in these circumstances.

Prevention is Worth a Pound of Cure

It can be much more difficult to get copies of records after a practice has closed. Patients should get copies of their medical records as they are generated instead of waiting until they’re needed. HIPAA Privacy Rule guidance states that individuals can get digital copies of digital information (or even digital copies of records kept on paper, as long as the practice has a scanner). Companies are developing tools and services that enable individuals and their care partners to collect, use, and store health records. Request digital (or paper, if that is preferred) copies of blood work, imaging, discharge instructions, and corresponding reports before you leave the practice.

What Happens to Medical Records When Offices Close? The Law

The Health Insurance Portability and Accountability Act (HIPAA) does not require a physician to retain medical records for any particular period of time. (HIPAA covered entities – which include physicians who bill health insurers for care – are required to keep records demonstrating compliance with HIPAA for at least six years – but those records are distinct from medical records.) However, if the physician still has those medical records – or has placed them in storage for safekeeping – the HIPAA requirements to produce them when a patient requests still apply.

State laws typically set medical record retention requirements for physicians and may also require the physician to take particular steps (such as notifying a patient) prior to or upon closure of a practice. 

An example of some of these state laws:

• In California, physicians must notify patients in advance of closure of the practice, and are still responsible for safeguarding records and making sure they are available to patients. The California Medical Association recommends physicians keep records for at least ten years from the last date the patient was seen.
• New York requires that medical records be retained for six years from the date of the most recent entry in the record, and patients are required to informed when a practice closes.
• Virginia prohibits the transfer of medical records as part of the closure or sale of a practice until the provider has first attempted to notify by the patient by mail or by publishing notice in a newspaper of general circulation in the area.
• Texas law requires physicians to keep records for a minimum of seven years after the date of last treatment, and physicians leaving a practice are required to notify patients.

During the record retention period, these records are considered to be still “available” and subject to the HIPAA right of access. Consult the medical board or the state medical society in the state where the physician has practiced for further information about physician requirements in the event of closure of a practice. The Medical Board should also have information about how to file a complaint if the physician’s practice has closed without any notice or information about how to obtain records. 

Irrespective of legal requirements, the American Academy of Family Physicians recommend that patients be notified by a letter that the office is closing, giving them the opportunity to obtain a copy of their medical records or have records forwarded to a physician of their choosing. The office may post an update on their website or social media page(s), if ones exist or run an ad in the local newspaper. Patients should be notified who will be the custodian of the medical records and their contact information.

Sorry! The Office Is Closed

Unfortunately, the reality is that most individuals do not get copies of their medical records throughout their care journey. This leaves patients and carepartners in need of records facing significant uncertainty, stress, and frustration when they unexpectedly find out that their doctor’s office has closed. Here are a number of critical tips to assist patients in gathering their medical records, directly and indirectly, in the event their doctor’s office has closed.

1. It is helpful to know when the office may have closed: was it recently or many years ago? As noted above, state laws govern how long records must be retained as well as how they must be handled with respect to confidentiality, privacy, and how they may be destroyed, when and if needed. Typically, records that are about 10 years from the last documented encounter, may be candidates to be destroyed and may be more difficult to obtain as a copy.  (As noted above, state laws may allow for them to be destroyed even sooner than 10 years.)

• Individuals should refer to the letter they may have received notifying them of the office closing and contact the designated records custodian. Updates may also have been posted to the physician or practice’s website or social media page, if available. The local librarian may assist with researching for the office closure notice in archived newspapers or posts in the public domain.

• Insurance companies, current and previous, should be contacted to request any claims that may have been received from the specific physician or provider’s practice. A supervisor should be requested and relayed specific information about the health information needed and why is it critical for one’s care. In the event individuals are encountering difficulty getting traction over the phone, individuals may turn to social media for help.  If the respective insurance company has a Twitter account, individuals may tweet their request while including the insurance company’s Twitter handle. Social media managers are often very responsive and may be an additional avenue for connecting individuals to the information they need if it is perceived that delays in response may be detrimental to their company’s reputation.

• Is there another doctor or professional now at the same physical office/facility location? Individuals should address the request in-person or via a call. The new office staff often receive many of the same questions from other previous patients and may have contact information for a point person on hand. They may also have the records in question if the practice was acquired (where applicable).

• Individuals should contact their local chamber of commerce, borough hall, or local Department of Health. If the office closure was recent, someone may know a way to connect with the doctor or a former staff member for more information.

• Did the doctor have other doctors on staff? If so, individuals may search for the other doctors who may still be in practice at another location to see if they may have a contact for where records have been retained.

• Individuals may quickly determine if their doctor is on social media, such as LinkedIn, Twitter, and Facebook, and respectfully direct message them with their request for more information.

• Individuals may search the internet for any recent press releases that may feature the doctor’s work, activism, or research and contact the respective article’s author or journalist. At minimum, they may be willing to forward the request for records to the doctor.

• If individuals need specific information on medications, they may contact the pharmacy that was used to fill respective prescriptions so as to request copies of prescription records.

1. Individuals should contact their primary care doctor, and other members of their  care team, to see if records were forwarded to them for continuity of care purposes.

1. If an individual’s doctor is deceased, the state medical licensing board may be contacted to determine the care provider’s county of residence. Consequently, the specific state’s county probate court may be contacted to confirm if there is a designated executor of estate that has authority over records retention processes. Alternatively, an obituary may list surviving next of kin which may also be contacted for more information on records retention.

1. If medical records were available digitally, individuals may look up their state and “health information exchange (HIE)”.  An HIE is a secure network that supports the electronic exchange of patient health information among trusted data entities typically across an entire state. Individuals should research if there is an HIE that may serve their local area. An HIE’s website will have a phone number and email to contact directly with your request.

1. If imaging was performed, individuals may reach out to the respective imaging center or the location where imaging was done to request copies of images on CDs and the corresponding reports.

1. If bloodwork was performed, individuals may contact the lab, such as Quest or LabCorp, that processed the tests directly for copies of final lab reports. Individuals may contact their insurance company, current or previous, if they are unsure of the names of the labs that may have been in-network via their plan; individuals can also use their right of access to get copies of claims from their health plan, which may identify the lab that processed the tests.

1.  If individuals are in need of immunization records they may contact their state Department of Health as they may have an immunization registry. The Immunization Action Coalition also has information on locating immunization records.

1. If individuals are working within the framework of a specific diagnosis or condition, they may research non-profits that support patients within that specific disease state and reach out for peer health support, where other individuals diagnosed with the same condition may also be able to assist in navigating these barriers to patient access based on their own lived experiences.

1. A state’s medical board, Office of the Attorney General (AG) and state’s Department of Health are all resources for additional support.

Individuals may also file a complaint with the Office of Civil Rights (OCR) at the Department of Health and Human Services (HHS) if all efforts have been exhausted and the needed medical records have not been obtained.

A closed practice does not need to be a dead end for patient access. Proactively requesting copies of medical records throughout one’s care journey can prevent encountering such patient access barriers. Continuing to share best practices for navigating patient access barriers, from legal, regulatory, and practical standpoints, is in the best interest of all patients.

Grace Cordovano, PhD, BCPA is a board-certified patient advocate specializing in the oncology space, a patient experience enhancer, and information unblocker.

Deven McGraw , JD, MPH, LLM (@healthprivacy) is the Chief Regulatory Officer at Ciitizen (and former official at OCR and ONC). She blogs at ciitizen.com.

Aaron Miri is the Chief Information Officer for The University of Texas at Austin comprising of the Dell Medical School, UT Health Austin clinical enterprise, research, and community impact missions.

Joining Zoya Khan (@zoyak1594) on Episode 25 of “The THCB Gang” were regulars patient advocate Grace Cordovano (@GraceCordovano), writer Kim Bellard (@kimbbellard), policy & tech expert Vince Kuraitis (@VinceKuraitis), data privacy expert Deven McGraw (@healthprivacy), and guest Rosemarie Day, Founder & CEO of Day Health Strategies (@Rosemarie_Day1). Rosemary’s book “Marching Towards Coverage” is out now. The conversation revolved around new health technology policies, Medicaid Expansion programs, the 2020 election, and the steps to get to universal health coverage. Oh, and you can take Rosemary’s quiz about what type of a health activist you are!

If you’d rather listen to the episode, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels — Zoya Khan

Episode 21 of “The THCB Gang” was live-streamed on Thursday, August 13th! Watch it below.

Joining Matthew Holt (@boltyboy) today are some of our regulars: policy & tech expert Vince Kuraitis (@VinceKuraitis), MD turned leadership coach Maggi Cary (@MargaretCaryMD), patient advocate Grace Cordovano (@GraceCordovano), and Consumer advocate & CTO of Carium Health Lygeia Ricciardi (@Lygeia). It was a great conversation surrounding the patients’ role in all the technology being deployed, how providers can work to close the gap in care, and whose duty is it really to ensure a person is “healthy”. Give it a listen below if you missed the live show

If you’d rather listen to the episode, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels — Zoya Khan