Mia T. Minen, MD, MPH

Headache disorders are extremely common and can be very disabling. Tension-type headache and 

 alone are the second and third most prevalent disorders in the world.

 Migraine is also the second most disabling condition globally

 and the most common cause of disability in patients below the age of 50.

 Within the US, 12% of the population are affected by migraine alone.

While it is an exciting time for the field of headache medicine, with many 

 already in existence for headache disorders and more emerging treatments on the horizon, proper diagnosis of headache disorders and subsequent delivery of appropriate treatments are imperative to alleviate the population burden of headache disorders. Unfortunately, the diagnosis rate of headache disorders is below 40%,

 and treatments for headache by nonspecialists can deviate from current evidence-based guidelines and are therefore suboptimal.

Our patients have a huge need for access to specialists, yet unfortunately, there is a huge shortage of headache specialists. In fact, the demand for headache medicine specialists is likely to outpace the supply compared to other neurology subspecialties. For example, there are an estimated 404 multiple sclerosis (MS) subspecialists in the US

 for an estimated MS population of approximately 700,000.

 This translates to a patient-specialist ratio of roughly 1750:1. In contrast, even in the Northeastern US, where there is the highest concentration of headache specialists, there are 123 headache specialists for an expected population of over 5.5 million affected by migraine alone, for an overwhelming patient-specialist ratio of 45,343:1.

 Thus, ensuring an adequate number of providers with specialty training in headache medicine, ideally in structured headache centers

 is needed to improve quality outcomes of headache disorders.

An increasing number of neurology residents are interested in headache medicine fellowship training.

 Nevertheless, certain myths still persist. The perceptions that headache medicine is not “hardcore enough” and headache seems more “psychogenic” are identified as the most influential barriers to headache medicine education during residency.

 Increased early exposure to headache medicine could help battle this trend. One reason for the persistence of this myth may be due to difficulties in correctly diagnosing a headache disorder and finding effective treatments. Studies suggest that the current undergraduate and residency training does not appear to adequately prepare trainees for managing headache disorders. However, studies show that the top reasons people choose to go into headache medicine are because they had a mentor in the field (65%), liked the patient population (53%), and worked in a headache center (41%). Thus, exposure to headache medicine specialists is key for mentorship and understanding and helping treat headache center patients.

 the headache specialists closest to you. Most of us would be happy to speak with you and if allowed by our institutions/office practice, have you spend time with us in our headache practice. Please note that since there is such a shortage of us, many states do not have a headache medicine specialist, so travel or tele-communication may or may not be necessary.

Join the American Headache Society Mentorship in Headache Luncheon at the annual American Academy of Neurology meetings

Consider asking your department for headache grand rounds speakers if they do not have them on the schedule already. Feel free to write to the speaker to see if you might be able to grab a cup of coffee before or after the talk.

Consider applying for any of the headache training programs: The American Headache Society Resident Education Program if you are a more junior resident or the International Headache Academy Program if you are more advanced.

See if you can help bring the American Headache Society half-day Resident Education for Assessment and Care for Headache (REACH) program to your institution if you do not have a headache center.

Obtain a trainee membership to the American Headache Society.

Attend an American Headache Society meeting (either the Scottsdale Symposium or the annual Scientific meeting). If you do this, be sure to attend the New Investigator and Trainee (NIT) Special Interest Group meeting.

Mia Minen, MD, MPH, is currently Chief of Headache Research at NYU Langone Health. She serves as the Chair of the Special Interest Sections of the American Headache Society. In addition, she is on the membership, education, and guidelines committees of the American Headache Society. Minen was also active in the New Investigator and Trainees Section of the American Headache Society. She led the study titled, “New Investigator and Trainee Task Force Survey on the Recruitment and Retention of Headache Specialists.”

Hao Huang, MD, attended Boston University School of Medicine and is currently a fourth year neurology resident at NYU. He will be pursuing a Headache Medicine Fellowship at NYU and is looking forward to becoming a headache specialist in the future.

1. Vos T, Flaxman AD, Naghavi M, et al. Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990-2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012;380(9859):2163-2196. doi: 10.1016/S0140-6736(12)61729-2

2. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet. 2017;390(10100):1211-1259. doi: 10.1016/S0140-6736(17)32154-2

3. Steiner TJ, Stovner LJ, Vos T, Jensen R, Katsarava Z. Migraine is first cause of disability in under 50s: will health politicians now take notice?. J Headache Pain. 2018;19(1):17. DOI: 10.1186/s10194-018-0846-2

4. Burch RC, Buse DC, Lipton RB. Migraine: Epidemiology, Burden, and Comorbidity. Neurol Clin. 2019;37(4):631-649. doi: 10.1016/j.ncl.2019.06.001

5. Steiner TJ, Antonaci F, Jensen R, et al. Recommendations for headache service organisation and delivery in Europe. J Headache Pain. 2011;12(4):419-26. doi:10.1007/s10194-011-0320-x

6. Minen MT, Azarchi S, Sobolev R, et al. Factors Related to Migraine Patients' Decisions to Initiate Behavioral Migraine Treatment Following a Headache Specialist's Recommendation: A Prospective Observational Study. Pain Med. 2018;19(11):2274-2282. doi: 10.1093/pm/pny028

7. Halpern MT, Kane H, Teixeira-poit S, et al. Projecting the Adequacy of the Multiple Sclerosis Neurologist Workforce. Int J MS Care. 2018;20(1):35-43. doi:10.7224/1537-2073.2016-044

8. Wallin MT, Culpepper WJ, Campbell JD, et al. The prevalence of MS in the United States: A population-based estimate using health claims data. Neurology. 2019;92(10):e1029-e1040. doi: 10.1212/WNL.0000000000007035

9. Mauser ED, Rosen NL. So many migraines, so few subspecialists: analysis of the geographic location of United Council for Neurologic Subspecialties (UCNS) certified headache subspecialists compared to United States headache demographics. Headache. 2014;54(8):1347-57. doi:10.1111/head.12406

10. Steiner TJ, Göbel H, Jensen R, et al. Headache service quality: the role of specialized headache centres within structured headache services, and suggested standards and criteria as centres of excellence. J Headache Pain. 2019;20(1):24. doi:10.1186/s10194-019-0970-7

11. Johnson et al 2012: Johnson NE, Maas MB, Coleman M, Jozefowicz R, Engstrom J. Education research: Neurology training reassessed. The 2011 American Academy of Neurology resident survey results. Neurology. 2012;79:1831-1834.

12. Mahajan et al 2019: Mahajan A, Cahill C, Scharf E, et al. Neurology residency training in 2017: A survey of preparation, perspectives, and plans. Neurology. 2019;92:76-83.

13. Minen et al 2015: Minen MT, Monteith T, Strauss LD, Starling A. New investigator and trainee task force survey on the recruitment and retention of headache specialists. Headache 2015; 55: 1092—1101.

Articles

Our patients have a huge need for access to specialists, yet unfortunately, there is a huge shortage of headache specialists.

A Shortage of Headache Medicine Physicians: How Trainees Can Get Involved

TECHNOLOGY IN NEUROLOGY: HEADACHE & MIGRAINE

Mr. Stieglitz is an attorney who represents clients regarding technology matters. Dr, Minen is Chief of Headache Research at NYU Langone Medical Center in New York.

: Doctor, I don’t think I need migraine preventive medication.

 You told me that you have three severe attacks each month and I’m concerned about the amount of ibuprofen you’re taking for more mild to moderate headaches. How often are you actually taking the medication?

 I‘m not sure because I don’t keep track. But I don’t want to take a daily medication.

 I know that you’re worried about adverse effects of migraine preventive medication but I’m concerned about the frequency of your headaches and the amount of pain medication you’re taking each month. Download a smartphone application to document your headaches and medication over the next month. We’ll review the results at your next visit.

 That sounds fine, doctor. Which smartphone application should I use?

 Some patients like [X] and others like [Z]. Why don’t you look into both of them and choose the one you like.

In headache medicine, the treatment plan frequently includes daily headache diaries. Historically, doctors have recommended paper diaries as the most common approach. However, 

 that electronic diaries have more reliability than traditional paper diaries, and their instant availability means that people with migraine can enter data whenever and wherever they have their phone.

 Over 100 commercial headache applications (apps) are 

 that allow migraine patients to record the severity and frequency of headaches, remind patients about medication use, and more. However, before recommending that patients use a particular app, doctors should consider whether patients understand the privacy implications of using the app, and whether the app could make use of recorded patient data that differs from the patient’s privacy expectations.

In the US, privacy law protections generally depend on the business sector collecting or holding the information rather than whether the information itself is considered private. (The sector-based approach of the US differs from many other countries that apply privacy protections to personally identifiable information regardless of the business sector involved.)

For the medical sector, the Health Insurance Portability and Accountability Act (HIPAA) requires “covered entities,” (including health care providers, health plans, and health care clearinghouses) to ensure that patients’ protected health information (PHI) is only disclosed for specific permissible uses, such as treatment, payment, and health care operations. HIPAA also applies by extension to “business associates” who receive PHI from a covered entity to provide necessary functions, such as billing and information technology. Covered entities must use a contract to ensure that business associates comply with HIPAA.

For the vignette above, the patients’ disclosure directly to the doctor of headache frequency and severity, along with medication history, receives strong privacy protection under HIPAA and may only be disclosed by the doctor for permitted purposes. For example, HIPAA generally prevents a doctor from selling information about a patient’s headaches to third parties for the purpose of marketing products to the patient (see, eg, 45 CFR § 164.508).

However, HIPAA’s privacy protection does not always apply to data recorded using an app, even if a doctor advises patients to use the app to facilitate medical discussions. Because the US uses a sector-based approach to privacy, a patient’s health information has no privacy protection under HIPAA if the patient discloses that information to an entity-such as an app service provider-that is not a “covered entity” or “business associate.”

When a patient downloads a mobile headache diary unaffiliated with the recommending doctor, HIPAA provides little protection of the personal information input by the patient, even if that information is later shared with a doctor. If HIPAA does not apply to the personal information collected by the app, the patient’s private health information may be collected, used, and sold by the app company for many purposes not related to health care, including advertising and marketing. (Even if HIPAA does not apply to a particular app, patients may still have some privacy protections based on other sources of US privacy law, such as the app’s privacy policies, or from regulation based on unfair and deceptive trade practices. These other sources of law are beyond the scope of this article.)

The US Department of Health and Human Services (HHS)-responsible for enforcing HIPAA-has provided 

 about when health apps are subject to HIPAA.

 The mere recommendation of an app to a patient by a doctor does not bring that app under HIPAA regulation. According to this guidance, HIPAA does not apply even if the doctor and app developer “have entered into an interoperability arrangement” at the patient’s request to facilitate transfer of the patient’s information to the doctor (HHS recommends this because the patient rather than the doctor initiated the relationship with the app developer.)

If HIPAA does not apply to the personal information collected by the app, the patient’s private health information may be collected, used, and sold by the app company for many purposes not related to health care.

On the other hand, HHS says that HIPAA does apply if the app developer contracts with the health provider for access to patient health records, patient messaging, and similar patient management services. This distinction can be ambiguous, and health care providers should consult an attorney regarding individual situations. This summary describes the current guidance; however, HHS may change this guidance and its recommendations.

Patients may not appreciate this very legalistic distinction regarding their privacy rights. They generally understand that the doctor-patient relationship includes confidentiality, but their 

 In addition, individuals with lower health literacy 

 to be greater than they actually might be.

 Because patients have an expectation of privacy and confidentiality when disclosing information directly to health providers, doctors should consider explaining that their recommendation of third party apps does not include any specific knowledge of the data practices of the apps' developers.

1 Giffin NJ, Ruggiero L, Lipton RB, et al. 

Premonitory symptoms in migraine: an electronic diary study

2 Minen MT, Torous J, Raynowska J, et al. 

Electronic behavioral interventions for headache

https://www.aptible.com/assets/what-is-a-hipaa-baa/OCR-health-app-developer-scenarios-2-2016.pdf

4. Federal Trade Commisssion. Mobile Health Act Interactive Tool. 

https://www.ftc.gov/tips-advice/business-center/guidance/mobile-health-apps-interactive-tool

A qualitative study of women’s views on medical confidentiality

6. Mackert M, Mabry-Flynn A, Champlin S, et al. 

Health literacy and health information technology adoption: the potential for a new digital divide

Just how private is that information your patient records in a mobile headache diary?

Mia T. Minen, MD, MPH

Articles

A Shortage of Headache Medicine Physicians: How Trainees Can Get Involved

Smartphone Headache Diaries: Privacy Pros and Cons

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